Alexander Palace Forum

Discussions about the Imperial Family and European Royalty => Tsarevich Alexei Nicholaievich => Topic started by: Louise on April 17, 2004, 10:32:26 AM

Title: Alexei and Hemophilia
Post by: Louise on April 17, 2004, 10:32:26 AM
With hemophilia playing such a pivotal role in the Royal Houses of Europe, I was wondering if there was any memoirs, diaries, correspondence between the families afflicted with this disability?

I have often wondered if Alix and Queen Ena commiserated about the affliction with their heirs? Did Alix seek advise from her sister Irene?

One would figure that each party would seek out advise and try to comfort each other.

Louise
Title: Re: Alexei and Hemophilia
Post by: Thomas_A. on April 17, 2004, 10:48:09 AM

As far as I know the disease was never mentioned in the family.
Queen Victoria used to say : "This disease does not exist in our family".

But in the letters Princess Alice of Hesse wrote to her mother she mentiones the suffering of her little Frittie - his bleedings and behaviour during these days...
It seems that it was a secret which everybody knew but nobody talked about it.
I read that Nikolaus II said the word "hemophilia" only once - when he was informed by the doctors after Alexej's first bleeding in 1904. Also Ernst Ludwig left no single word about the illness - neither in addition to his own brother, nor in Alexej's. He wrote " soon it became clear that the boy was ill.." But THE WORD never appears.
Title: Re: Alexei and Hemophilia
Post by: rjt on June 11, 2004, 07:54:01 AM
Does anyone know of the presence of the disease in the current reigning houses?
Title: Re: Alexei and Hemophilia
Post by: ChristineM on June 11, 2004, 08:30:21 AM
The haemophilia gene, passed through mother to daughter, only the symptoms of the disease are manifested in the son.   Males do not pass on the gene.   (I know this is an extremely simple explanation of a very complicated genetic disorder).    So far as the House of Windsor is concerned, it was only Queen Victoria's daughters who could carry the gene.   Therefore through Edward VII, George V, George VI.   It is likely therefore, the line has lost this genetic inheritance because none of their respective wives carried the haemophilia gene.   Suffice to say, neither Princes William nor Harry are haemophilics.

What appears to have been overlooked is that Alexandra Feodorovna's sister Irene's - Princess Henry of Prussia - youngest son, Henry, suffered from haemophilia.  He was born in 1900 and died in 1904.    Princess Henry was therefore only too aware of the agonies suffered  both by her young sister and her nephew who was born the same years as her own son's death.

tsaria
Title: Re: Alexei and Hemophilia
Post by: Penny_Wilson on June 11, 2004, 10:22:16 AM
Quote
The haemophilia gene, passed through mother to daughter, only the symptoms of the disease are manifested in the son.   Males do not pass on the gene. ...

tsaria


Males definitely do pass on the gene if they live long enough to have children.  

Each person has two "sex" chromosomes: a male has an X and a Y(XY); a female has an X and an X(XX).  Each parent passes one of these chromosomes on to each child:

XY
XX = XX, XY, XX, XY

As the hemophilia chromosome is carried on the X chromosome, every single daughter of a hemophiliac man will be a carrier courtesy of the X chromosome she received from her father(let's indicate an "infected" X chromosome as X(h):

X(h)Y
XX     = XX(h), XY, XX(h), XY


As you can see, no daughter is free of the hemophilia gene because her father had no other X chromosome to pass on to her. No son will have the condition, because they will receive their X chromosome from their mother, and an uneffected Y chromosome from their father.

A case in point is Queen Victoria's son, Prince Leopold.  He grew to adulthood, married a German princess and had two children before his death: an un-"infected" son who became the Duke of Coburg; and a daughter, Princess Alice of Athlone, who was a carrier.  She passed hemophilia on to her own son, who died at a young age.  Princess Alice's daughter was Lady May Abel Smith, and I'm not sure is she was a carrier -- perhaps someone else here knows...
Title: Re: Alexei and Hemophilia
Post by: ChristineM on June 11, 2004, 01:46:19 PM
Dear Penny

I stand corrected and bow to your scientific knowledge.   I am sure you will agree re the original question 'Alexei's haemophilia and the Royal Houses - the House of Windsor need no longer worry about falling prey to the curse of haemophilia.

I think the point that this dreadful disease, uniting two august sisters in fear and grief, underlines the frailty and vulnerability of all humankind.

tsaria
Title: Re: Alexei and Hemophilia
Post by: jehan on June 11, 2004, 10:31:58 PM
Quote

As far as I know the disease was never mentioned in the family.
Queen Victoria used to say : "This disease does not exist in our family".

In all fairness, while I have read this quote in QV bios, one has to put it in context.  The Queen was not in denial, but stated this after her son Leopold was born and she was told of his disease.  And she was right- at that point, there HAD been nobody else with haemophilia in her family, as far as anyone knew.

Certainly it was discussed frequently in letters to and from Alice, Vicky and others. usually as "this awful disease".  While it was not announced publicly, it was certainly something the family was aware of, and it was NOT ignored.

(My first post here, although I have been lurking for a while!)
Title: Re: Alexei and Hemophilia
Post by: Olga on June 11, 2004, 11:49:44 PM
Is it fairly certain then that OTMA Nikolaevna were carriers?
Title: Re: Alexei and Hemophilia
Post by: Penny_Wilson on June 12, 2004, 12:39:44 AM
Quote
Is it fairly certain then that OTMA Nikolaevna were carriers?


No, I don't think it's at all certain that any of the girls were carriers, though statistically speaking, half of them should have been.  Alexandra had one X(h) chromosome(from Alice) and one X chromosome(from Ludwig as his family did not have this condition).  Nicholas had an uneffected XY set of chromosomes:

XY
XX(h)

So the girls could have been XX or XX(h).

If the family was extraordinarily lucky, then no daughter would have inherited the X(h) chromosome -- if they were extremely unlucky, then all of them would have had it.  

As far as I know, we just don't know if any of them was a carrier, though Marie's bleeding difficulties during her tonsillectomy have led some to believe that she could have been a "symptomatic carrier," meaning that while she herself didn't have hemophilia, she was a carrier who exhibited in herself some of the symptoms.
Title: Re: Alexei and Hemophilia
Post by: ptitchka on June 12, 2004, 10:52:39 AM
Poor Alexei, if he had lived to marry!   :'(  Imagine his pain if he lived long enough to see one of his grandsons suffer from what he'd known he'd pass on.
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on June 26, 2004, 10:03:39 AM
 :)     Hello All, I am new to this but have been dealing with this "awful disease" as someone put it my entire life almost 28 years now. And it is not as awful now as it once was. I can only imagine how it was for them back then, but I wanted to say that PLEASE do not look at it as awful, because it is no longer that way.
Granted I think it is the worst thing to ever hit our family...I lost my father because of it and many many others have lost from it as well. BUT I do have two sons that do have it and they are no different than anyone else! You cannot look at them and tell.

I am sorry if I sound a little rude about it...I do not mean to come off as that way. I tend to be defensive though and if anyone out there has this touching their lives I would hope you know what I am talking about.

  Now that that is out of my system...I am just learning about the Russian Royals....it was told to my Grandmother when my father was born that she and my Grandfather BOTH had recessive genes and that is where it came from. NOW in all my research that I have done, and I have done a lot, I have never come across this explanation for it. I have heard of genetic mutation, and it just being in the chromosones that the good Lord gave you, but never this.

  IF there is anyone out there that can explain this paticular explanation to me I would be forever greatful.

  Thank You and I look forward to reading more about this family.
                                               Shan
Title: Re: Alexei and Hemophilia
Post by: ptitchka on June 26, 2004, 12:38:21 PM
Dear Shan --

I appreciate your writing in to this forum, as your letter serves as a reminder to all of us that no one who bears the cross of illness, genetic inheritance or disability would ever want to be defined by the cross they bear.

Certainly the Martyred Tsarevich lived far above his hemophilia, and I am glad you and your sons do, too.  Thank God that now there are treatments and may He bless your family!

Your remarks about two recessive genes contributing to the inheritance of hemophilia make me wonder if the considerable inbreeding common to the royal families of Europe may have had something to do with the emergence of the gene in Victoria in the first place.  I confess I do not know much either -- is there in fact much to that theory?
Title: Re: Alexei and Hemophilia
Post by: grandduchessella on June 26, 2004, 09:58:27 PM
Quote
With hemophilia playing such a pivotal role in the Royal Houses of Europe, I was wondering if there was any memoirs, diaries, correspondence between the families afflicted with this disability?

I have often wondered if Alix and Queen Ena commiserated about the affliction with their heirs? Did Alix seek advise from her sister Irene?

One would figure that each party would seek out advise and try to comfort each other.

Louise


I've never heard of any correspondence between Ena and Alix, but Alix & Irene did commiserate with each other. During one of Alexei's bouts, Nicholas wrote that Irene was there and it was a great blessing as she was so kind and sympathetic.  Regarding concerns within the family & intermarriage, QV wrote to Victoria Hesse that a marriage between Ernie & Maud wouldn't be wise because of the symptoms being shown in "dear Irene's" little boy (Waldemar). I don't think that enough was known about genetics to know that Maud wasn't a carrier and neither could Ernie be--it seemed to be believed on QV's part that the closeness of the relationship could contribute plus Maud's not "being strong".
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on June 27, 2004, 09:03:15 AM
 

Thank you for the kind words! As for a link between Royal imbreading...one would have to wonder! I know I have thought that many times....because they were all related in some sort of way. I am unsure of the facts on this paticular subject, and it is time consuming to sift though all the documentation to find the facts!

I have often wondered also why they named the disease what they did...look up the meaning of the two words that go into making the word....

Hemo=blood   Philia=love or lover

Isn't that a strange thing? I mean you can look at it in a lot of different ways but when it comes back to it that is just a strange word for this disease.

Anyway, I bought Nicholas and Alexandra last night and I intend on getting it read as soon as I can...I am sure there will be a lot more to say.

Thank you, Shan
Title: Re: Alexei and Hemophilia
Post by: Janet_W. on June 27, 2004, 11:53:16 AM
Does the concept of "inbreeding"--with particular regards to the European royal houses--offend anyone else on this website? Cousins marrying cousins was not such a strange thing 100 years ago and more; selection of a mate was much more limited, whether you lived in a village hamlet or belonged to a royal family.

One of the problems I face in explaining my interest in Queen Victoria, Empress Alexandra, etc., is that the general response is, "Oh yeah--they were really inbred!"  With the implication being that the majority of European royals were walking around with three eyeballs each and drool running down their faces.

I happen to have seen the negative results of an actual case of "inbreeding," and I can tell you that it does not resemble anything we've seen in the royal houses of Europe! Naturally, if one person was the carrier of a gene, it would be likely to passed on to that person's children . . . and cousins marrying cousins would reinforce the situation. But if you study the various descendants of Queen Victoria, you will see there was a wide variety of intelligence, looks, temperment, ambition and health situations among her children, grandchildren and great-grandchildren . . . as in any family.  

I hope I treat folks with hemophilia the same way I treat folks with any other type of condition, be it cancer, Alzheimer's disease, AIDS, diabetes, Downs Syndrome, loss of sight or hearing, or whatever--with consideration (as I would treat anyone) and the knowledge that is just one aspect of that person's life, and it doesn't mean the rest of us are licensed to be judgmental or patronizing, or that we need to run screaming in the other direction.     :)

Title: Re: Alexei and Hemophilia
Post by: grandduchessella on June 27, 2004, 04:39:40 PM
It doesn't offend me (Henry & Irene were one of my favorite couples) , I was just pointing out some of QV's remarks concerning hemophilia. She certainly did consider some of the ramifications of it, which is why she welcome "new" blood like the Battenbergs and being willing to marry her daughter Louise to a member of the nobility despite the condemnation of the European houses. I think inbreeding in some cases took a toll, for example the Hapsburgs/Bavarians with children of cousins marrying children of cousins on and on. Some attribute the mental instability of various family members to this. I think it's interesting that QV was willing to "think outside the box" when it came to marrying off her descendants rather than just plucking a cousin off the list, she once remarked "first cousins is best to avoid".
Title: Re: Alexei and Hemophilia
Post by: nerdycool on June 27, 2004, 09:37:22 PM
The term "inbreeding" doesn't really offend me, though the term doesn't seem to totally fit with the subject. It calls to mind some country family where sisters marry brothers in my opinion. A better term, I think, would be "inherited". Anyway, one of my royal projects is to make a complete-as-possible family tree of every major ruling house in Europe. I had completed one starting with Queen Victoria (OMG, over a thousand people there!), but that was before I changed computers, and unfortunately, I didn't save that tree. It was very interesting to see how many of her descendents married one another. But then again, when one has to marry royal and all the ruling houses have descendents of QV, there's not a whole lot you can do. I'm currently working on the Romanov tree from the time of Ivan the Terrible until now. I'll keep track of how many "family marriages" there were and the health trends of them.

But one quick question... with WWI and the end of many ruling houses in that period it'll be hard to determine, but does it appear to anyone else that the hemophilia in the royal houses "died out" (no pun intended) after WWI ended? What I really mean is, is there any mention of the disease showing up in the family after WWI? It would be interesting to see if this disease was present for only a few decades and then went away. But then again, with the Revolution and other events, that halted some of the spread.

Does this make any sense? Sometimes I wonder....  ::)
Title: Re: Alexei and Hemophilia
Post by: ptitchka on June 28, 2004, 08:05:57 PM
As I recall from the family trees I have seen in books, the gene for hemophilia expressed itself in the Spanish royal family and MAY have in a boy who died in infancy.  The Great War and the Russian Revolution may have resulted in the deaths of at least one sufferer and possibly at least one carrier, but that was only a coincidence to tragedy.
Title: Re: Alexei and Hemophilia
Post by: grandduchessella on June 28, 2004, 11:21:43 PM
Quote
But one quick question... with WWI and the end of many ruling houses in that period it'll be hard to determine, but does it appear to anyone else that the hemophilia in the royal houses "died out" (no pun intended) after WWI ended? What I really mean is, is there any mention of the disease showing up in the family after WWI? It would be interesting to see if this disease was present for only a few decades and then went away. But then again, with the Revolution and other events, that halted some of the spread.


It appears that hemophilia has "died out" in the royal families.
In the English house: (1)Leopold of Albany---Alice of Teck--Rupert (died of hemophilia, no children), dau. May Abel-Smith (not carrier)
(2) Beatrice of Battenberg--Leopold (d.1922, sufferer, no children)
In the Russian House: Alexis , OTMA possible carriers
In the German House: Irene of Hesse--Waldemar (d.1945, no children), Henry of Prussia (d.1905?, no children), Sigismund (not sufferer)
In the Spanish House: Ena of Battenberg--Alfonso (suffer, no descendants), 4th son (can't remember name, sufferer, no descendants), Beatriz & Marie Christina (descendants, not apparently carriers)

It seems Waldemar of Prussia was the last royal hemophiliac to die (1945 from lack of blood transfusion facilities fleeing the Soviet Army) and he had no children. Of the females of the later generations (i.e. May Abel-Smith, the Spanish Infantas) their children and grandchildren appear clear of the illness.

On a side note, for those who believed in the 20s and longer that Anastasia might've survived (Anna Anderson) ever thought that if she had told the truth and had her son with her, if he was hemophiliac, that would've boosted her claim. The odds were at least one of OTMA probably would've been a carrier.
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on June 29, 2004, 06:23:10 AM
[quote author=Janet_W.
\ I hope I treat folks with hemophilia the same way I treat folks with any other type of condition, be it cancer, Alzheimer's disease, AIDS, diabetes, Downs Syndrome, loss of sight or hearing, or whatever--with consideration (as I would treat anyone) and the knowledge that is just one aspect of that person's life, and it doesn't mean the rest of us are licensed to be judgmental or patronizing, or that we need to run screaming in the other direction.     :)

[/quote]

;D
I would not think that most people would treat anyone with hemophilia any differently than any one else. Fact of the matter is, unless you know that someone has it, you could not pick them out of the crowd.

I was looking though the photos in the Nicholas and Alexandra book and notice a picture of little Alexi in metal braces to "help" a bleed he had. Oh My, that would have made it so much worse. Just makes me heart go out to them for NOT having the advances like we have today..even like we had 20 years ago to know that metal braces would have caused much much more pain and prolonged a bleeding episode, or even made more begin. I do feel for them in that aspect.

As for the imbreading...I am pretty sure that is where it came from....then again...some people have said it is cause when both parents put off a recessive chromoson...yet I cannot find anywhere where that has been the case. I know when my father was born with hemophilia that is what they told my grandparents and they have lived with guilt, that I do not believe they should have had to live with. This is my quest...to prove or disprove what they were told so many years ago! If there is anyone out there that has any information on this I would appreciate it.

As for the meaning of the words....Me and a friend of mine have been doing some research for a few months now on why it was names hemo (blood) philia (love/lover) and we have not found anything. Again if anyone has information I would appreciate it.

I know I came onto the board somewhat strong...I do get pretty passionate when it comes to hemophilia, and it is due to the fact that 80% of people I come across know nothing of it but think they know everything about it. Sorry if I came off as rude!

Thanks Everyone, Shan
Title: Re: Alexei and Hemophilia
Post by: bookworm8571 on June 29, 2004, 11:59:22 PM
I'm not a geneticist, but everything I've ever heard on the subject suggests that the doctor who gave your grandparents this information was dead wrong. Your dad had hemophilia because your grandmother was a carrier. Your grandfather had nothing to do with passing down that gene. Your sons have hemophilia because you inherited the gene from your hemophiliac father and are a carrier. If your sons have daughters, all of them will be carriers of the hemophilia gene and all of their sons will be completely free of the gene, unless they happen to marry girls who are carriers of the hemophilia gene themselves.

The hemophilia in the Imperial family had nothing whatsoever to do with inbreeding or cousin marriages. Alexei would have been a hemophiliac even if Alix married someone completely unrelated to her. The gene was passed down to Alexei by his mother. The only case where a cousin marriage would have been potentially lethal would be the rare case of a hemophiliac marrying a carrier of a hemophilia gene. Most children of even first cousin marriages are perfectly healthy and bright. I know of such families.
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on July 01, 2004, 08:10:19 AM
 ;)

  I am not sure if imbreading "started" the gene...but if that is not it where did it come from? I did not mean to imply that Alexandra married a cousin or anyone in her family did and that is what caused her son to have it. Sorry should have been more clear!

   I belive the doctor that told my Grandparents this was totally full of it and just didn't know how to explain it. There is genetic mutation...and that could have been it...but back in the late 50's I am not sure, but I don't think they knew much about genetics!

  As far as the info I have been give...if my sons have daughters there is a 50/50 chance that they will be carries, just as there is with my daughter...now I may have been told wrong...You hear some much about it and have to sift through it and see what the deal really is. I pray my sons have sons and my daughter is not a carrier so that this will leave our family forever...but you look at the odds and I have about half a chance of that happening.

  As for my Grandmother telling me to read the book...I have read NOTHING in there that states anything about recessive genes....I however had not gotten though the book...so if anyone that has read it can tell me it is there so I can look it up I would appreciate it.

Thanks, Shan
Title: Re: Alexei and Hemophilia
Post by: Adele on July 01, 2004, 09:12:33 AM
Definitions of words and Hemo-Philia:

Perhaps when the scientists of the time were naming the disease, they were looking at the second definition of 'philia', which means 'tendency toward'.

If we take the second definition and attach it to 'hemo', it means 'tendency towards bleeding'.

As you know, the meanings of words change over time.  For example, the world 'sophistication' actually means 'to alter deceptively' and 'phoney'.  However, when used into today's english vocabulary, it means 'Glamourous'.

By the way, 'Philia' is one of the four types of love, according to the Greeks;  In Greek, Philia refers to a 'brotherly' type of love (as in the city where I reside:  Phila-delphia---'City of Brotherly Love').

Can anyone list the other three?  Let's see, if my poor memory serves me:  philia (brotherly love), eros (sexual love), aggape (motherly love) and for the life of me I can't remember the fourth one.  Is there even a fourth one?????

Where's that cup of coffee??????  Or maybe I need to eat some tuna (brain-food!)

Adele---in Philadelphia!
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on July 01, 2004, 09:53:46 AM
First, the etymology of hemophilia is that it was a German word coined in 1829, based on ancient Greek..  Philia in Greek can also mean "affinity for", and the term seems to mean "affinity for bleeding (blood)".
Thanks Google!
FA
Title: Re: Alexei and Hemophilia
Post by: Adele on July 01, 2004, 10:21:08 AM
Quote
First, the etymology of hemophilia is that it was a German word coined in 1829, based on ancient Greek..  Philia in Greek can also mean "affinity for", and the term seems to mean "affinity for bleeding (blood)".
Thanks Google!
FA



Thanks, FA:  Since the word wasn't coined until 1829, that would indicate that its defination changed some from the original (ancient) Greek one.

When you have a moment, could you send me the source on Google (where Google got the information) ---send it to my email address.  

---Adele
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on July 01, 2004, 11:25:55 AM
Thanks!

I too would like to know what web page you got that from because I could not find anything like that!

Thanks, Shan
Title: Re: Alexei and Hemophilia
Post by: Adele on July 01, 2004, 11:37:52 AM
Quote
Thanks!

I too would like to know what web page you got that from because I could not find anything like that!

Thanks, Shan



Hi Shan,
     I'm also a little wary of Goggle because the information isn't always correct.  Not that I'm implying FA's information isn't correct, I just feel more comfortable with direct citations.  Like from the Such-And-Such edition of a particular Dictionary/Encyclopedia.  I guess I've worked in too many libraries for too long a time!!!

      Shan, I'd also like to thank you for all your comments; I've learned so much about hemophilia now, that I didn't understand before.  And it makes me even more sympathetic towards poor Alexei----AND his family!  Sometimes the caretaker suffers even more because of the feeling of helplessness.  Very, very sad.

Take good care of yourself,
Adele
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on July 01, 2004, 12:16:23 PM
Stedman's Online Medical Dictionary, 27th Edition     hemo- + G. philos, fond

Tufts University "homeric dictionary" philos , comp. philiôn and philteros, sup. philtatos, voc. at the beginning of the verse phile: own, dear, but it must not be supposed that the first meaning has not begun everywhere in Homer to pass into the stage of the latter, hence neither Eng. word represents its force in many instances, phila heimata, philos aiôn, and of parts of the body, philai cheires, etc. Pl. philoi, dear ones, friends, one's own, Od. 4.475. Neut., philon, phila, pleasing, acceptable; philon epleto thumôi, aiei toi ta kak' esti phila phresi manteuesthai, you like to, Il. 1.107 ; phila phronein, eidenai tini, be kindly disposed, Il. 4.219, Od. 3.277.
and
3. in Poets, philos is used of one's own limbs, life, etc., philon d' exainuto thumon he took away dear life, Il.; philon êtor, phila gounata, patêr philos, philê alochos Hom.; philên agesthai to take as his own wife, Il.
and from Slater: phi^li^os friendly, fond
these last from: http://www.perseus.tufts.edu/cgi-bin/resolveform
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on July 01, 2004, 12:16:36 PM
Adele you are very welcome...and if you ever have any questions please do not be afraid to ask...I will do my best to answer them as best I can with the most accurate information I can.


As for the ety...of the word....think about the meaning of affinity......think about it! Still a strange thing to name it any way you look at it!

Shan
Title: Re: Alexei and Hemophilia
Post by: Adele on July 01, 2004, 01:35:58 PM
Quote
Stedman's Online Medical Dictionary, 27th Edition     hemo- + G. philos, fond

Tufts University "homeric dictionary" philos , comp. philiôn and philteros, sup. philtatos, voc. at the beginning of the verse phile: own, dear, but it must not be supposed that the first meaning has not begun everywhere in Homer to pass into the stage of the latter, hence neither Eng. word represents its force in many instances, phila heimata, philos aiôn, and of parts of the body, philai cheires, etc. Pl. philoi, dear ones, friends, one's own, Od. 4.475. Neut., philon, phila, pleasing, acceptable; philon epleto thumôi, aiei toi ta kak' esti phila phresi manteuesthai, you like to, Il. 1.107 ; phila phronein, eidenai tini, be kindly disposed, Il. 4.219, Od. 3.277.
and
 3. in Poets, philos is used of one's own limbs, life, etc., philon d' exainuto thumon he took away dear life, Il.; philon êtor, phila gounata, patêr philos, philê alochos Hom.; philên agesthai to take as his own wife, Il.
and from Slater: phi^li^os friendly, fond
these last from: http://www.perseus.tufts.edu/cgi-bin/resolveform



Once again our FA comes through:  thank you!  ---Adele
Title: Re: Alexei and Hemophilia
Post by: Adele on July 01, 2004, 01:39:45 PM
Quote
Adele you are very welcome...and if you ever have any questions please do not be afraid to ask...I will do my best to answer them as best I can with the most accurate information I can.


As for the ety...of the word....think about the meaning of affinity......think about it! Still a strange thing to name it any way you look at it!

Shan



Hi Shan,
 We have similar minds!  I think it's strange, also.  Now I'm interested in who or what committee decided to use that name .
   And thank you!  I will have questions, definately, later on.  It's so nice having you contribute to our Discussion page.

Warm regards,
Adele
Title: Re: Alexei and Hemophilia
Post by: hemphiliamom on July 18, 2004, 11:09:22 PM
I have just finished reading the book and If someone can point out to me WHERE in the book it says ANYTHING about recessive genes causing his hemophilia I would appreciate it...yes I know it has to be an X sex link recessive gene...but where does it say anywhere in there that BOTH parents had recessive genes? This is what my grandmother told me. This is why I spent 20 bucks and read a 600 page book...Yes I am a reader and I love to do it so it was not a big deal, the big thing is I didn't get out of it what she was saying...SO I am hoping that if anyone has any info they might be able to pass it along! Thanks, Shan!
Title: Re: Alexei and Hemophilia
Post by: bookworm on July 19, 2004, 08:02:49 PM
[ As far as the info I have been give...if my sons have daughters there is a 50/50 chance that they will be carries, just as there is with my daughter...now I may have been told wrong...You hear some much about it and have to sift through it and see what the deal really is. I pray my sons have sons and my daughter is not a carrier so that this will leave our family forever...but you look at the odds and I have about half a chance of that happening. ]

  Sorry, but all of your sons' daughters will definitely be carriers. The chances are 100 percent. The hemophilia gene is on the X chromosome and your sons would only be able to pass on their affected X chromosome to their daughters. All of their sons would be completely healthy and unaffected unless Mom happens to be a hemophilia carrier. Your daughter does have a 50 percent chance of being a carrier.

  Hemophilia is not passed on by both parents -- no recessive genes. It's always passed on by a carrier mother or, indirectly, by a hemophiliac father. If there was a mutation, it would have been in your grandmother's genes, not your grandfather's.
Title: Re: Alexei and Hemophilia
Post by: elizaveta on August 16, 2004, 08:10:41 PM
Would like to refer all members to an excellent article in The American Journal of Hematology 77:92-102 (2004) by John M. L. Kendrick called Historical Perspective.  Russia's Imperial Blood:  Was Rasputin Not the Healer of Legend?

A sober, thorough-going review suggesting childhood blood disorders that mimic hemophilia and that might have led to a mis-diagnosis of Alexei's condition in an era when current diagnostic methods were not available.

The AJH is a highly respected medical journal, and their publication of this review, at the very least, makes one pause to reflect.

E
Title: Re: Alexei and Hemophilia
Post by: Robert_Hall on August 16, 2004, 09:22:50 PM
Mr. Kendrick is also quite well known for his reporting & advocacy of a [deceased] claimant to be the Heir Alexei.  I would say almost as convincing & sober as Mr. Kurth's for AA.
Cheers,
Robert
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 16, 2004, 11:10:46 PM
Quote
Mr. Kendrick is also quite well known for his reporting & advocacy of a [deceased] claimant to be the Heir Alexei.  I would say almost as convincing & sober as Mr. Kurth's for AA.
Cheers,
Robert


Yes, and probably his article will help Mr Kendrick to convince himself further as how Alexei was supposed to have survived.

I know the AJH, however the inclusion of this article in no way detracts from the prestigious nature of this journal.

Kendrick is hypothesizing that Alexei may have suffered a platelet disorder known as Thrombocytopenia (a condition mainly caused by use of cetain drug therapies or cancer). While correctly stating that there were no laboratory results made at the time to bring about a definitive scientific result, he is wrong to suggest that hemophilia was not present. Despite the lack of testing for Factor VIII in Imperial times, it does not imply that the lifelong symptomology present should be ignored.

Since Alexei's remains have yet to be located, Kendrick has now seized the opportunity to say that the diagnosis of Hemophilia could today be placed into some doubt, until those remains are found and tested in a modern laboratory. The deliberate use of his final words were intended to place doubt in the mind of some readers unaware of the historic significance of his 'subject'. However he conveniently seems to have ignored the wisdom of Alexei's physicians of the day and documented family history of this condition.
Title: Re: Alexei and Hemophilia
Post by: bookworm on August 16, 2004, 11:55:55 PM
Considering the family history of hemophilia in Alexei's family, I think it would be very likely that's what he had. That is unless Alexei's great-uncle Prince Leopold of Great Britain, his maternal uncle Frittie who died as a child, two of his maternal first cousins, two maternal first cousins once removed and two maternal second cousins all had the same different childhood blood disorder cited in this journal. There are different types of hemophilia and different degrees of severity. I doubt anyone knew the difference back then or now what variety of hemophilia Alexei actually had.
Title: Re: Alexei and Hemophilia
Post by: LisaDavidson on August 17, 2004, 12:28:13 AM
I agree, Elizaveta. It's best to weigh evidence wherever possible. I have always found Mr. Kendrick to be professional in his work. While he does have a point of view, I don't think he would disregard the truth in seeking resolution for this case,
Title: Re: Alexei and Hemophilia
Post by: ptitchka on August 17, 2004, 07:02:12 AM
The proof is going to be in the pudding.  What we should read are the rebuttals that will follow the publication of this article.  Publication of a medical hypotheses does not mean anything more than its exposition.  They are proven and disproven all the time, especially when they sound spectacular.  

IF Mr. Kendrick has based his hypotheses solely on the case of ALEXEI and taken his ENTIRE medical history into account, then those hypotheses are a bit more credible than one might suppose.  But bear in mind that he has developed his theories working backwards from the case of his Estonian claimant, who died of another blood disease altogether.  The identity of the Tsarevich is much more difficult to steal than that of his elder sisters because of his illness, and so there arises the 'possibility' that maybe the most famous hemophiliac in the world did not have the same disease as Prince Leopold and the two Spanish heirs had.

Title: Re: Alexei and Hemophilia
Post by: Kim on August 17, 2004, 08:21:46 AM
I am not doubting the theory based on the man's views, nor do I doubt that such a misdiagnosis is possible. But given the strong family history of hemophilia, it probably was that in Alexei.
Title: Re: Alexei and Hemophilia
Post by: Michelle on August 17, 2004, 10:18:11 AM
Well said, elizaveta.  There's no harm at all in taking at least a look at someone else's point of view and where they're coming from--ESPECIALLY if it is published as you say in a prestigious medical journal and reviewed by experts for submission.  Just because the theory isn't the traditionally excepted version doesn't mean it's not worth even a peek. ;)  With time, new discoveries of what happened in history are inevitable.  So traditional versions of events aren't going to forever be totally valid.  Possiblities have to be explore to gain more understanding. :)
Title: Re: Alexei and Hemophilia
Post by: ptitchka on August 17, 2004, 06:26:16 PM
IF this theory that the Tsarevich had thrombocytopenia had been made for the sake of pure science by a bona fide hematologist, we would be applauding this person's insight without a qualm.  If this theory can stand alone in the event that the Estonian claimant were proven once and for all not to have been Alexei, there is no reason why Mr. Kendrick would not deserve at least some credit for the hypothesis regardless of the faulty premise he used to reach it.  I do not mean to completely dismiss that hypothesis out of hand unless it falls flat along with the impostor.  

Here is a link to that article:  

http://www3.interscience.wiley.com/cgi-bin/jhome/35105

Title: Re: Alexei and Hemophilia
Post by: Belochka on August 18, 2004, 01:52:23 AM
Kendrick asserts that the key to diagnosing  Alexei's condition Thrombocytopenia vs Hemophilia should be based on historic allegations about Rasputin's capabilities.

If I understand the article correctly, Kendrick contends that if it could be proven that Rasputin did not heal Alexei, then Alexei must have suffered Thrombocytopenia, and not Hemophilia. IMHO this is a very broad statement to present to the medical community.

Surely a reasonable starting point to help cement his assertions would have been to examine the medical records of all known affected members of the Royal Houses, compare lifelong symptomologies and including causes of death of each individual.

Documented historic information informs us that there was a bleeding disorder passed down from Queen Victoria. The condition at the time was little understood, since the causative factors for Hemophilia only became known in 1937 (by the research of Patell & Taylor at Havard). Certainly the Royal Disease could have been attributed much later to a form of Congenital Thrombocytopenia and not to some form of Hemophilia.  However the type of symptoms now known to be attributed to Congenital Thrombocytopenia were not described when Alexei was born. He appeared normal for the first several weeks, and it was not until several weeks had passed that spontaneous bleeding was observed seeping from his umbilicus. From these documented descriptions, coupled with subsequent episodic hemorrhaging into his joints, the ease of bruising etc., he was correctly diagnosed as suffering Hemophilia.

Alexei's initial diagnosis was made well before the trip to Spala, which Kendrick believes was the starting point of Alexei's actual condition (without proof) could have been attributed to an underlying viral infection, despite the trauma of a fall.  Even if this conjecture was remotely accepted to have any veracity, then it might be plausible to suggest that Alexei may have begun to show symptoms of viral induced Thrombocytopenia.  

But it it is difficult to accept this proposal on a number of points:

1. There was no evidence of any viral (or bacterial) infection contracted in the autumn of 1912,

2. Family genetics clearly describe otherwise,

3. Early diagnosis of a bleeding dysfunction in the first few months (not days) after birth.

4. His condition was episodic, with periods of reasonable health and appearance.  

Furthermore, to discuss a sample of one (knowing that there was some kind of familial genetic predisposition), is neither credible nor scientific. His proposals could only be considered as highly speculative.

The paper was presented as a Historical Perspective having the status of a curiosity, which sets it apart from the more meritorious scientific endeavors published in the same journal, which are subject to peer review.
Title: Re: Alexei and Hemophilia
Post by: ptitchka on August 18, 2004, 07:06:06 AM
Thank you, Belochka.  I suspected that there would be nothing more from Mr. Kendrick than what he has stuck to time and time again.  Basing his speculations about a lifelong hemophiliac only on the most dramatic and life-threatening episode of his illness known to posterity is not scientifically sound.  Perhaps publication in a medical journal does not necessarily imply an author's credence.  Mr. Kendrick's attempt at iconoclasm here is typical not only of his partisanship but of a certain school of pseudo-scholarly journalism.  Perhaps in his sincerity he has not set out to deceive others but has certainly deceived himself.

I wrote an e-mail to the St. Petersburg Times about how I wished they had written something about the 100th birthday celebrations instead of giving publicity to the cause of an impostor by bringing up this article.

If, however, this forces the hand of someone in the scientific community to go about the process of eventually disproving the claims of the Estonian man through DNA testing, maybe it's not all that bad.
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 18, 2004, 10:14:12 PM
Quote
 Perhaps publication in a medical journal does not necessarily imply an author's credence.  Perhaps in his sincerity he has not set out to deceive others but has certainly deceived himself.

I wrote an e-mail to the St. Petersburg Times about how I wished they had written something about the 100th birthday celebrations instead of giving publicity to the cause of an impostor by bringing up this article.


Hi Pravoslavnaya,

Unfortunately his AJH publication will add nicely to his c.v. However it would be doubtful that the majority of his select audience would have all that much interest in the contents of the article. It must be remembered that Kendrick is not as far as I am aware a qualified hematologist nor a medical scientist.

Had Kendrick really understood the longterm complications caused by untreated Thrombocytopenia, I would have doubted that we would be reading his 'learned proposal'.

I congratulate you on e-mailing the SPb Times, since they are seeking reader responses for their 1000th issue. Wishing you success! :D




Title: Re: Alexei and Hemophilia
Post by: Michelle on August 18, 2004, 10:44:56 PM
I'm not trying to be rude or annoying to anyone, but if Alexei's hemophilia was only episodic as you say, then wouldn't that in itself suggest that it could've been something else he had?  If it was really hemophilia then it would be there all the time, not just off and on.  Like any normal kid, Alexei most likely got bruised quite often from playing.  In hemophilia, even if the person gets the slightest bruise or cut, it is a disastrous problem.  

Also, the genetic factor can also be disputed because Alexei's ancestors could very well have had something different from hemophilia.  When Alix's little brother Frittie died at a ridiculously young age from falling out of a window, it was said to be of hemophilia.  Now, maybe that was true, but I would think almost ANYONE who suffered a treacherous fall from a high up window when they're only a few years old would die.  Who wouldn't suffer from brain hemmorraging after taking a nasty fall like that if they landed on their head?  That goes for any sort of hemmorhaging for that matter.  That's serious trauma that anyone could suffer.  

I don't know much about the other "hemophiliac" relatives, but it shouldn't be dismissed that they could've had some other blood disease.  I would assume that thrombocytopenia could be genetic too.  And considering that back then no one knew of any other blood disorder besides hemophilia (because of much more primitive medical knowledge than we now have today), the people of the day would naturally assume that it was hemophilia since they didn't know any better.  

Sorry that this post turned out so long, I didn't mean to drone on.  :) ::) :P
Title: Re: Alexei and Hemophilia
Post by: ptitchka on August 18, 2004, 11:47:55 PM
Quote
I'm not trying to be rude or annoying to anyone, but if Alexei's hemophilia was only episodic as you say, then wouldn't that in itself suggest that it could've been something else he had?  If it was really hemophilia then it would be there all the time, not just off and on.


It most certainly WAS there all the time.  That is why the Tsarevich was so closely supervised as a small boy.

Quote
 Like any normal kid, Alexei most likely got bruised quite often from playing.  In hemophilia, even if the person gets the slightest bruise or cut, it is a disastrous problem.  


Remember, Alexei Nikolaevich was NOT a normal child.  What for a normal boy means dusting off the jeans and forgetting right away how he's tripped over the sidewalk could have killed the Tsarevich.  His bumps and bruises led to horrific sufferings more than once.  The horrible swellings seen on him, the painful pressure on the nerves, the possibility of bleeding to death, the complications that stiffened the joints, not to mention days or even weeks spent in bed recovering from injuries that would not have meant so much suffering for a normal child ... were not normal.  There are too many anecdotes describing his childhood injuries to cite here.  Mr. Kendrick does not make as much of when the Tsarevich was injured when he was learning to walk as the boy's grandmother did, or of nosebleeds or of complete inability to walk for weeks after leg injuries, because these various injuries suffered throughout do not lend themselves to the theory he bases on one specific bleeding episode.   They are, however, quite typical of life lived under the constant threat hemophilia presents.




Thrombocytopenia may be genetic in some cases, but is far more often induced by external causes such as drug treatments for other diseases or seen as a symptom of some cancers.  It is seen in both men and women, and is generally not regarded as a disease in and of itself.  Manifestations of a thrombocytopenic condition may include bruising and bleeding, but such bleeding as this leads to other complications than do the life-threatening episodes of hemorrhage to which a hemophiliac in the days prior to the use of Factor VIII was prone.  
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 19, 2004, 01:30:54 AM
Hi Michelle,

You ask good questions, so please don't feel uncomfortanble about asking them.

Persons affected with Hemophilia have the condition for life. Today it is managed thru intravenous infusion of Factor VIII concentrate and other means. Today life expectancy can be normalized by reducing chronic joint disease (a complication of this condition).

As a young child grows and becomes more active, the frequency of spontaneous bleeding into the joints may increase as a consequence. However the frequency of bleeding can decrease with age. This could be explained by the active youthfulness of children, where the risk of trauma resulting from play from falls and bumps is far greater. By this analogy, the frequency of spontaneous bleeding episodes will vary each month, it can even only occur every few years. Much depends on the type of Hemophilia present, because there are a few forms described which relate to the severity of sypmtoms and the time they are diagnosed. This means there were relatively 'healthy' periods which Alexei would have enjoyed. He swam, rowed boats and did what young lads would do, despite the constant adult supervision.

Joints are the most common sites of spontaneous bleeding, left untreated the condition will cause prolonged bleeding and is often accompanied by excessive pain and swelling. Fevers may be present. Hemophilia is usually diagnosed in the first year of life.

Historic documents tell us that Alexei appeared healthy with normal pink skin. It was not until several weeks had elapsed that he was observed to bleed spontaneously from his umbilicus.

Such descriptions would preclude that Alexei's condition could be diagnosed today as Congenital Thrombocytopenia.

Neonates with such a condition will present symptoms at birth or within 2 - 3 days post partum - showing severe, generalised petechiae (small crimson spots on the skin) caused by subcutaneous hemorrhaging. Nose bleeds and bleeding of the gums are common features, with eventual loss of eyesight (due to retinal bleeding) will also occur. The cause of death is usually intracranial hemorrhaging. Left untreated it can prove fatal. This condition can be readily excluded in the case of Alexei. Remember that Alexei was an active young lad.

The acquired form of Thrombocytopenia is excluded because this condition is not inheritable. It can develop after longterm administration of certain medications, chemotherapy, severe meningitis and complications in pregnancy and yes also viral infections.

The acquired form of Thrombocytopenia must be excluded because we know that Alexei was suffering from his blood disorder before his first birthday, it was episodic throughout his short life, which is characteristic for the diagnosis of Hemophilia. Importantly, there was no documented evidence that he was ill in Spala except from the episode which resulted from a fall in the bathtub if I remember correctly.

It would be fanciful to suggest that the Royal Disease was anything but Hemophilia. Agreeably both Hemophilia and the more recently understood mechanisms of Thrombocytopenia do have some commonalities, however the well documented descriptions of all Alexei's episodes all point to his condition as being Hemophilia.

Finally, we are aware that the Royal Disease affected some males in the Royal House. If Kendrick's hypothesis has any credibility, then how would he be able to explain how so many 'affected' male relatives developed acquired Thrombocytopenia if the condition was not Hemophilia.   
Title: Re: Alexei and Hemophilia
Post by: Annie on August 21, 2004, 12:47:19 PM
another theory on the blood disease, or is this the same thing and the same false Alexei?

http://www.npsnet.com/alexei_found/
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on August 21, 2004, 12:51:06 PM
Same theory, same author (kendrick), same false Alexei, same Agenda
Title: Re: Alexei and Hemophilia
Post by: Michelle on August 21, 2004, 08:37:15 PM
Thank you, Belochka, for your kind as well as deeply informative response. :) :) :)  It's all just so difficult and complicated to understand :-/  I don't know.  Both what you said AND Kendrick said make sense, however it's all Greek to me ::)  So I guess I'm still skeptical in both cases. . . But honestly, I'm most definitely NOT refraining from taking what you said into consideration. :)
Title: Re: Alexei and Hemophilia
Post by: Louise on August 21, 2004, 09:07:48 PM
Thank you Belochka. As Michelle stated your response was very informative and educational. I have a few questions regarding Alexei's hemophilia, and I hope someone can answer them. First, I have seen pictures of Alexei in a mud bath. What was it for and how was it suppose to benefit the child? He didn't look very pleased.

Second, and this maybe goofy, but with childhood incidents, and growth, comes tooth loss. How would the doctors and family have coped with the loss of Alexei's baby teeth? What would they do to stem the loss of blood that occurs?

Louise
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 22, 2004, 01:54:37 AM
Quote
but with childhood incidents, and growth, comes tooth loss. How would the doctors and family have coped with the loss of Alexei's baby teeth? What would they do to stem the loss of blood that occurs?

Louise


Hi Louise,

To answer your question simply, the majority of hemophiliacs are able to stop bleeding from minor cuts, which would include the normal lose of deciduous teeth. One simple remedy for minor abrasions was to place ice over the site and application of pressure would have helped.

Alexei's major problem would have been if he had to undergo tooth extraction or had dental decay. Fortunately he would have been saved from from this fate by the lack of processed sugary junk food of today. However the normal daily practice of brushing his teeth would have been a constant problem.

As for mud baths, since Roman times such baths are considered to have curative properties, because of the minerals contained within the mud slurry. Traditionally the practice was used for arthritis and rheumatic ailments. If anything it is supposed to be relaxing as well, which would have helped Alexei's general wellbeing, had he enjoyed his experience!  ;D
Title: Re: Alexei and Hemophilia
Post by: Louise on August 22, 2004, 06:53:10 PM
Thanks for the information. I have always wondered why they immersed the poor boy in mud and I can see the bewildered look on his face as he looks at his mother.

Louise
Title: Re: Alexei and Hemophilia
Post by: Alexa on August 24, 2004, 09:16:59 AM
Granted, I haven't read the article in question yet, but from personal experience, I recommend that anything writtin in a magazine be looked at with quesitoning eyes.  

A few months ago I had an article published in a well respected magazine as a side bar to another article about the same person I wrote about.  My (and my co-author's) article was more narrow in subject, so being a side bar made perfect sense.  However, the other article was historically questionable.  The author wrote as fact what my co-author and I (through information that was easy to find) had declared as dubious at least a year earlier.  And yet this information was printed as fact.  So please, remember what our grade shcool teachers taught us -- never believe everything you read.  And take it one step further -- just becuase it's in a pretigious or well respected magazine doesn't mean the information is accurate or true.

Alexa
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 24, 2004, 07:57:39 PM
Hi Louise,

There is a photograph of Dr Botkin applying the mud slurry to Alexei's arm, while an assistant worked on the legs. Derevenko is looking on from behind. Alexei is not impressed by this procedure at all!

See: p 222 in The Romanovs love, power and tragedy. Bokhanov, 1993
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 24, 2004, 08:09:30 PM
Quote
just becuase it's in a pretigious or well respected magazine doesn't mean the information is accurate or true.

Alexa


Kendrick's effort is not a scientific paper based on credible reproduceable research. It is just a basic discussion paper which places it into a different category within the journal. The unfortunate consequence is that he will remain unchallenged by notable Hematologists, which no doubt suits his purposes quite nicely.
Title: Re: Alexei and Hemophilia
Post by: Louise on August 24, 2004, 08:27:27 PM
Thanks for the info. That book is added to my "must have" list.

Louise
Title: Re: Alexei and Hemophilia
Post by: Belochka on August 24, 2004, 09:05:02 PM
 ;DHi Louise,

This particular Bokhanov book is really supurb ... an absolute "must have"! ;D
Title: Re: Alexei and Hemophilia
Post by: Sushismom on August 25, 2004, 03:41:18 PM
While his theory may be within the realm of possibility, it seems unlikely. Review of this article by professionals would be for medical overview only and doesn't in any way mean his theory is correct.
Title: Re: Alexei and Hemophilia
Post by: ptitchka on August 25, 2004, 11:58:30 PM
Galileo and Copernicus did well in their spheres, the Church in its domain.  There is a lot to be said for faith in concert with reason.  But Kendrick's speculations about the nature of the Tsarevich-Martyr's illness are built not on the Tsarevich's known bleeding episodes but on the illness of the impostor he believes was Alexei.  They may make interesting reading but follow from faulty logic.   Anyone claiming to be Alexei has always had to demonstrate he was prone to the lifelong bleeding episodes typical of Alexei.  I can only applaud Belochka's expertise in explaining just what congenital thrombocytopenia in infants really involves and in confirming from a medical standpoint just why the Tsarevich could not possibly been anything other than a hemophiliac.

The earth is round.  Faith is the essence of things hoped for and the realization of things unseen.   And Kendrick's impostor was not Alexei no matter how working backwards from what the man did have and coming up with this stuff results in something that sounds fascinating to the average layman.  I would hardly classify this theory as debate or put it on the level of momentous discovery.
Title: Re: Alexei and Hemophilia
Post by: Geshtahl on October 14, 2004, 10:00:08 AM
Did Rasputin's influence cause Nicholas to not spend money on medical research? Was he doing so in the first place? I understand that the treatments of the day were ineffective, did they even have the knowlege of blood transfusions or the centrifuge? And finally, What was Russia's top medical school at the time?




Thank you,
       Geshtahl






Title: Re: Alexei and Hemophilia
Post by: Olga on October 14, 2004, 10:02:34 AM
I don't think blood transfusions came around until the 1920s, and at least in Britain.  ???
Title: Re: Alexei and Hemophilia
Post by: rachel5a on October 14, 2004, 11:33:02 AM
u find many information about it in R.Massie book "Nicholas & Alexandra"
Title: Re: Alexei and Hemophilia
Post by: Angie_H on October 14, 2004, 12:22:16 PM
Quote
I don't think blood transfusions came around until the 1920s, and at least in Britain.  ???

Different blood types were discovered in 1900 and 1901 at the University of Vienna by Karl Landsteiner in the process of trying to learn why blood transfusions sometimes cause death and at other times save a patient.  
Title: Re: Alexei and Hemophilia
Post by: Alicky1872 on October 14, 2004, 01:11:21 PM
I could be wrong, but I swear I heard on a recent tv program that the first (crude) blood transfusions were carried out in ancient Egypt!
Title: Re: Alexei and Hemophilia
Post by: grandduchessella on October 14, 2004, 03:17:25 PM
I also thought I saw a documentary or read something about rudimentary transfusions carried out in battlefield hospitals around the time of the Crimean War (??). It still would've been pretty dangerous around Alexei's time regardless--I don't know when they started learning about blood type compatability , contagious diseases and Rh compatability.

OK, I did some research:
Catholic authors take pains to discredit the story of Innocent VIII's deathbed. Supposedly as the Pope sank into a coma, the harrowing story was told that, at the suggestion of a Jewish physician, the blood of 3 boys was infused into the dying pontiff's veins. They were ten years old, and had been promised a ducat each. All three died. Historians of medicine note this event as the first reported historical attempt at a blood transfusion. [I find this HIGHLY doubtful and probably with some anti-Semitic overtones] With Harvey's discovery of the circulation of the blood, more sophisticated research into blood transfusion began in the 17th century, with successful experiments of transfusions between animals. However, successive attempts on humans continued to bring death. The first fully-documented human blood transfusion was administered by Dr. Jean Baptiste on June 15, 1667. He transfused the blood of a sheep to a 15-year old boy (the boy later died, and Baptiste was accused of murder). Only in the first decade of the 19th century was the reason for such death found in the existence of blood types, and the practice of mixing some blood from the donor and the receiver before the transfusion allowed a greater number of successes. While the first transfusions had to be made directly from donor to receiver before coagulation, in the 1910s it was discovered that by adding anticoagulants and refrigerating the blood it was possible to store it for some days, thus opening the way for blood banks.

Title: Re: Alexei and Hemophilia
Post by: JonC on October 14, 2004, 05:11:52 PM
To all.

I read on the 'searchingalexei' web site that Alexei may not have had Hemophilia. Does anyone know more on this?
The author of the piece indicated that Alexei's symptoms were not indicative of one who sufferred from this disease. Best regards. JonC.
Title: Re: Alexei and Hemophilia
Post by: LisaDavidson on October 14, 2004, 05:34:52 PM
JonC: I am well acquainted with John Kendrick and respect the work he has done on the Heino Tammet - Vancouver Alexei claimant. I do not agree with all of his conclusions, but his is an interesting story and Kendrick a reputable journalist.
Title: Re: Alexei and Hemophilia
Post by: JonC on October 14, 2004, 06:02:53 PM
Lisa.

I realize that the ' Heino Tammet ' claim is questionable at best and I have dismissed it entirely.

The article raised an interesting point though. I had always thought that Alexei deffinitely had hemophilia and yet I learned that he didn't have the correct symptoms which doctors today would deffinitely diagnose to be hemophilia.

In reflecting back on what I've read, Alexei's doctors never diagnosed him having hemophilia. What do you think? Best regards. JonC.
Title: Re: Alexei and Hemophilia
Post by: LisaDavidson on October 14, 2004, 06:36:23 PM
I think that Alexei had hemophilia.

We also don't have his clinical records. We have limited information on his symptoms based on the observations of people without medical training. The best medical minds available in Russia at the turn of the last century diagnosed hemophilia. I am quite certain we now have much more information on the pathology of this disease than we did then and certainly a better idea on how to treat it. Is it possible that Alexei was misdiagnosed? Of course!
Title: Re: Alexei and Hemophilia
Post by: Geshtahl on October 14, 2004, 09:41:08 PM
Lisa and Jon,
 There is also a condition known as "Christmas' Disease" which is simmilar to hemophilia (I am NOT sure but I think hemophilia is factor VIII deficiency whereas Christmas' Disease involves factor IX) perhaps this could explain the discrepancy?




                                                                 Geshtahl

P.S. I've read Massie, alas I don't own "The Bible" so if you could give me a page # I would appreciate it Val.
Title: Re: Alexei and Hemophilia
Post by: Belochka on November 30, 2004, 09:34:23 PM
Mr Kendrick may have inspired debate among us here but does he provide any credible scientific evidence for his opinions?
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 01, 2004, 04:15:36 PM
This is certainly another very interesting topic to speculate about. Thanks, Belochka, for your elaborations on the subject.
I just took a look at the Kendrick website, and although I admit I didn't have the patience to read through all of the pages (my computer is kind of slow), I got the gist of it.
I try to stay open minded and am open to the fact that there may be a slight chance that Alexei may have been misdiagnosed, although considering all the other factors it is very unlikely. The fact that Alexei's body was never found also somewhat may play into this as far as some people are concerned.
But what else do we know about this Canadian Alexei? It seems that he just came out of nowhere. It may say on the website, but like I said I didn't get to read the whole thing, but did anyone else? how does he say he survived the 1918 massacre? Or is this one of the claimants who says that there was no massacre and that the whole family survived? Also, I looked at the photos, and while of course many years passed in between, those ears really give him away! Alexei did not have such big floppy ears. This of course is not very scientific, but please take a look, they are so obviously different ears. This guy's ears are huge and round while Alexei's are normally shaped and of normal size. At least that's the way they look to me. Maybe someone else may think differently. ;)  Hey, I know, maybe this guy is really Prince Charles!! Kidding  ;)

(http://img45.exs.cx/img45/6153/alexei1915.png) (http://img53.exs.cx/img53/1664/Alexei1934.gif) (http://img68.exs.cx/img68/1462/Alexei1950.png)
 

Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 01, 2004, 07:09:44 PM
Quote
LOL Helen! (prince charles)

that person looks like Ken Jennings! (Jeopardy champ)

If there is a possibility that Alexei was misdiagnosed, what else could he possibly have?


Actually, now that I look at the middle picture more closely, he kind of looks like young Vladimir Lenin (before he lost his hair). Now wouldn't that be a hoot!  ;D Sorry guys, I'll be more serious now.

You know, Abby, anything is possible, but the reason I don't think Alexei was misdiagnosed is the fact that then it would mean that all his other relatives who were thought to have hemophilia, like Leopold, QV's son, and Alexei's own uncle, and QV's other grandsons were misdiagnosed too. No one tried to re-diagnose them through out history because, unlike Alexei, they didn't have claimants...  ;) But maybe someone did try to re-assess the Queen Victoria gene? Anyone know? I must start being more openminded!  :D
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 01, 2004, 07:20:17 PM
Young Lenin:
;)


(http://img70.exs.cx/img70/8687/younglenin.png)
Title: Re: Alexei and Hemophilia
Post by: Nathan_Davis on December 02, 2004, 05:25:17 PM
Thank you for the referral, elizaveta. A very interesting article and an interesting theory....but given the preponderance of evidence for the existence of hemophilia on the maternal side via Queen Victoria, it would take a lifetime or two of research to give the theory really solid support.

:DAnd I must agree, helen...little Volodya certainly is quite the charmer. Too bad that, as an adult, he was not...shall we say...among the Light of Heart. :-/

Fondly,

Nathan



 
Title: Re: Alexei and Hemophilia
Post by: Alice on December 03, 2004, 06:30:28 AM
From Alexandra's DNA, did they discover the faulty gene that causes haemophilia? (I don't know if this is even detectable from the remains . . .)
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 03, 2004, 11:22:57 AM
Quote
From Alexandra's DNA, did they discover the faulty gene that causes haemophilia? (I don't know if this is even detectable from the remains . . .)

Alice,

I believe that this can be done, but the hemophilia gene has not been tested for officially in those remains, as far as I know. It would have been interesting to see what they would have come up with...
Title: Re: Alexei and Hemophilia
Post by: rskkiya on December 03, 2004, 12:08:36 PM
To be honest I really didn't think that there were any viable possible health conditions which may have been misdiagnosed as Hemophilia other than Hemophilia! Various types of Blood diseases are not my personal point of expertize (sp) so I really don't have much to contribute to this discussion.
Sorry!


(I heart Volodya 4ever)LOL


rskkiya
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 03, 2004, 12:24:59 PM
In his article Kendrick speculates that it may have been hemolytic anemia misdiagnosed as hemophilia in all  QV's descendants who were thought to have hemophilia  ??? And that in Alexei's case it was that combined with a virus that caused all these pesky problems he was having throughout the years...
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on December 03, 2004, 12:29:32 PM
In 1803, a Philadelphia physician named Dr. John Conrad Otto wrote an account of "a hemorrhagic disposition existing in certain families". He recognized that the condition was hereditary and affected males. He traced the disease back through three generations to a woman who had settled near Plymouth, New Hampshire, in 1720.


The word "hemophilia" first appears in a description of the condition written by Hopff at the University of Zurich in 1828.Hemophilia has often been called "The Royal Disease". This is because Queen Victoria, Queen of England from 1837 to 1901, was a carrier. Her eighth child, Leopold, had hemophilia and suffered from frequent hemorrhages. These were reported in the British Medical Journal in 1868. Leopold died of a brain hemorrhage at the age of 31, but not before he had children. His daughter, Alice, was a carrier and her son, Viscount Trematon, also died of a brain hemorrhage in 1928.

Even more important to history was the existence of hemophilia in the Russian Royal family. Two of Queen Victoria's daughters, Alice and Beatrice, were also carriers of hemophilia. They passed the disease on to the Spanish, German and Russian Royal families.

see: http://www.hemophilia.ca/en/2.1.2.php
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 04, 2004, 09:36:26 AM
Here are a few more links to websites with information about the hemophilia connection to the royal families of Europe...

http://iaia.essortment.com/royalhemophil_ravx.htm

http://www.people.virginia.edu/~rjh9u/roylhema.html

http://histclo.hispeed.com/royal/eng/v1/ukv1h.htm
Title: Re: Alexei and Hemophilia
Post by: ptitchka on December 04, 2004, 09:52:12 PM
Quote
This is certainly another very interesting topic to speculate about. Thanks, Belochka, for your elaborations on the subject.
I just took a look at the Kendrick website, and although I admit I didn't have the patience to read through all of the pages (my computer is kind of slow), I got the gist of it.
I try to stay open minded and am open to the fact that there may be a slight chance that Alexei may have been misdiagnosed, although considering all the other factors it is very unlikely. The fact that Alexei's body was never found also somewhat may play into this as far as some people are concerned.
But what else do we know about this Canadian Alexei? It seems that he just came out of nowhere. It may say on the website, but like I said I didn't get to read the whole thing, but did anyone else? how does he say he survived the 1918 massacre? Or is this one of the claimants who says that there was no massacre and that the whole family survived? Also, I looked at the photos, and while of course many years passed in between, those ears really give him away! Alexei did not have such big floppy ears. This of course is not very scientific, but please take a look, they are so obviously different ears. This guy's ears are huge and round while Alexei's are normally shaped and of normal size. At least that's the way they look to me. Maybe someone else may think differently. ;)  Hey, I know, maybe this guy is really Prince Charles!! Kidding  ;)

(http://img45.exs.cx/img45/6153/alexei1915.png) (http://img53.exs.cx/img53/1664/Alexei1934.gif) (http://img68.exs.cx/img68/1462/Alexei1950.png)
  



Needless to say, Tammet's face is definitely not that of a Romanov.  Its shape and complexion do not remind me of Nicholas' face, nor of Alexandra's -- and the handsome little son definitely took after his mother.  Of all the men who have ever pretended that they were the Tsarevich, none of their looks ever hearkened back to the boy's much at all, and probably only Nikolai Chabotarev even had half as sweet a face as Alexei's.
Title: Re: Alexei and Hemophilia
Post by: Belochka on December 04, 2004, 11:47:20 PM
The only thing which could be said about Photo # 2 and Photo # 3, is that there is a strong correlation between them.

How interesting that the author fails to include any more youthful images of Heino Tammet. Hmm  ::)

Title: Re: Alexei and Hemophilia
Post by: Belochka on December 05, 2004, 12:01:33 AM
Thanks for links everyone.

What I am interested in finding out is whether there have been any other authors who have published any statements claiming that Alexei did not suffer from Hemophilia?

Was the Canadian journalist the only person who has?
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 05, 2004, 10:47:15 AM
Quote

...only Nikolai Chabotarev even had half as sweet a face as Alexei's.

Pravoslavnaya , who is Nikolai Chabotarev? I never heard of him.

Belochka, I too am curious to find out whether anyone else ever questioned the hemophilia diagnosis in QV's descendants, or is John Kendrick the first one to do that? Does Mr Kendrick have any medical background?
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on December 05, 2004, 11:13:26 AM
Kendrick has no medical background at all. He taught himself to support the claims of his "alexei". He is the only person who has ever questioned the hemophilia claim in the Victorian line, and so far, no peer review journal has ever published a paper by an expert in the field who has shown real evidence to support his claims. Kendrick writes letters to the journals of his claims, but no evaluation to support the claims has occured
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 05, 2004, 12:17:34 PM
Quote
Kendrick has no medical background at all. He taught himself to support the claims of his "alexei". He is the only person who has ever questioned the hemophilia claim in the Victorian line, and so far, no peer review journal has ever published a paper by an expert in the field who has shown real evidence to support his claims. Kendrick writes letters to the journals of his claims, but no evaluation to support the claims has occured

In which case what makes Mr Kendrick imagine that he is qualified to raise these "misdiagnosis" claims? I wonder if he has perhaps spoken to a hemophilia specialist while writing his article? I looked at his references and it looks like he got a lot of his information off some websites, but has not actually consulted with any specialists in the field...
Title: Re: Alexei and Hemophilia
Post by: Belochka on December 05, 2004, 09:08:40 PM
I wonder whether Kendrick's flash of ingenuity came from Radzinsky's London statement, where he spouted that "Maybe Alexei did not have hemophilia. At the time medicine was not so advanced." So much medical wisdom coming from a playwright!

It is indeed fascinating that no Hematologist appears to have stepped forward to refute this nonsense. Perhaps this mystery can easily be explained by the fact that few scientists read the American J. Hematology from cover to cover. Due to time constraints, most would only consult articles which are specific to their own research.  The Historic Perspective which is just a general curiosity inclusion in the J. must have flowed past them all into its own historic obscurty?  ;D  
Title: Re: Alexei and Hemophilia
Post by: rskkiya on December 06, 2004, 11:14:25 AM
Again

I am not persuaded by this essay and I find the fact that the author of it apparently has no real medical or related background to be highly suspicious. In my opinion, there is no evidence that Alexie had any blood condition other than Hemophilia.


rskkiya
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 06, 2004, 11:25:24 AM
Quote
Again

I am not persuaded by this essay and I find the fact that the author of it apparently has no real medical or related background to be highly suspicious. In my opinion, there is no evidence that Alexie had any blood condition other than Hemophilia.

rskkiya
I tend to agree.
Title: Re: Alexei and Hemophilia
Post by: Sushismom on December 06, 2004, 03:42:08 PM
In the mentioning of Queen Victoria's son Leopold, my medical facts may be wrong, but isn't hemophilia transmitted through the mother only (unless both parents carry the gene)? Isn't the gene passed to daughter from mother and not the father?
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 06, 2004, 04:28:58 PM
Quote
In the mentioning of Queen Victoria's son Leopold, my medical facts may be wrong, but isn't hemophilia transmitted through the mother only (unless both parents carry the gene)? Isn't the gene passed to daughter from mother and not the father?


When a male suffers from hemophilia it is passed on to his daughters via his X chromosome, so the daughter becomes either a carrier, or she may be a hemophiliac too if the mother is also a carrier and she inherits both hemphiliac X's from both her parents...
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 06, 2004, 06:39:35 PM
Quote
Question

Has anyone ever found evidence of hemophilia in Queen Victoria's family before Queen Victoria?

Does anyone know the odds of a random mutation?

Jeremy


Jeremy, as far as I know, there no evidence of hemophilia in QV's family before her. That still doesn't mean anything because a mutation could have easily happened. I don't think we have specific statistics for the random mutation because this is exactly what it is : random. IMHO all that needs to happen is for any kind of a mutation (only one base even) to occur in the area of the DNA sequence that codes for the specific blood clotting protein, and viola: you have a hemophilia gene. So not that outrageous of an idea to consider at all. This mutation could have occured in Victoria some time soon after her conception. I mean someone has to get it first in a given genetic line, why not Victoria...
Title: Re: Alexei and Hemophilia
Post by: Belochka on December 06, 2004, 09:50:45 PM
The mutation of the gene which causes Hemophilia would have manifested in Queen Victoria's children in three ways:

1. The mutation could have occured in Queen Victoria's X  chromosome at the time of her conception.

Under this scenario, Queen Victoria would have the defective gene and passed it on to some of her own offspring. She would have been the first to carry the Hemophiliac gene.

2. The mutation resulted because the X  sperm had mutated.

By the second scenario Queen Victoria could never have introduced hemophilia to her offspring.

3. The mutation was a consequence of a mutation in Queen Victoria's X  chromosome at the time of conception of the child.

Again with this scenario, Queen Victoria could not be held responsible for transmitting the Hemophilia gene. Only one child would have been affected. This was not the case.
Title: Re: Alexei and Hemophilia
Post by: Belochka on December 07, 2004, 12:00:15 AM
It is the mtDNA which is more prone to mutations in the aged. Those mutations rates vary depending on the cell type.
Title: Re: Alexei and Hemophilia
Post by: Belochka on December 07, 2004, 12:18:25 AM
When the mother is over 35, the risk of chromosomal disorders in the child increase at the time of conception. The most common genetic disorder in live births is Down's syndrome. This condition is caused by an extra chromosome (Trisomy 21).
Title: Re: Alexei and Hemophilia
Post by: Labuanbajo on December 12, 2004, 08:11:14 PM
Where did the hemophiliac gene start in the family? If Queen Victoria carried the gene, which parent gave it to her? Some people have speculated that the gene arose through a spontaneous mutation. Others think that the Duke of Kent was not Victoria's father.
Title: Re: Alexei and Hemophilia
Post by: Olga on December 13, 2004, 07:36:25 AM
It appears the gene did arise in Queen Victoria through mutation.

Are there rumours regarding Victoria's paternity?
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 13, 2004, 05:18:14 PM
Quote
It appears the gene did arise in Queen Victoria through mutation.

Are there rumours regarding Victoria's paternity?


Yes, there is a book called "Victorians" by Wilson, if I remember correctly. This author claims that Victoria was probably an illegitimate child of John Conroy, her mother's alleged lover. But as far as we know, John Conroy did not suffer from hemophilia either - if this is the way this author thinks the gene was passed to Victoria. I am pretty sure a mutation was the culprit and not Vic's mother's illicit affair, as Victoria definitely has that unmistakable "Hanoverian" look  ;D.
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 13, 2004, 05:23:36 PM
Quote
[ As far as the info I have been give...if my sons have daughters there is a 50/50 chance that they will be carries, just as there is with my daughter...now I may have been told wrong...You hear some much about it and have to sift through it and see what the deal really is. I pray my sons have sons and my daughter is not a carrier so that this will leave our family forever...but you look at the odds and I have about half a chance of that happening. ]

   Sorry, but all of your sons' daughters will definitely be carriers. The chances are 100 percent. The hemophilia gene is on the X chromosome and your sons would only be able to pass on their affected X chromosome to their daughters. All of their sons would be completely healthy and unaffected unless Mom happens to be a hemophilia carrier. Your daughter does have a 50 percent chance of being a carrier.

   Hemophilia is not passed on by both parents -- no recessive genes. It's always passed on by a carrier mother or, indirectly, by a hemophiliac father. If there was a mutation, it would have been in your grandmother's genes, not your grandfather's.


Yes bookworm, is absolutely correct: if the father is a hemophiliac, all his daughters will be carriers because he only has one X chromosome to pass to his daughters - the X with hemophilia. And since the Y chromosome is not affected at all, none of the sons will be affected.
Title: Re: Alexei and Hemophilia
Post by: AGRBear on December 29, 2004, 02:44:48 PM
In the book THE ESCAPE OF ALEXEI, SON OF TSAR NICHOLAS II by Petrov, Lysenho and Egorov they describe the claimant Vasily Filatov as having p. 122  "hemiparesis of the muscles", therefore, the IF family doctors had been in error saying Alexei had hemophilia.  

Can this hemiparesis have the same symtoms as hemophilia?

Let me add here,   I think Filatov appears to have been too short to be Alexei,  however,  I am curious about their claim about the similarities of hemiparesis and hemophilia /haemohilia.

Thanks

AGRBear

PS:

On another thread I was asking about Alexei's condition on the night of 16/17 July 1918 and why it was reported that Nicholas II carried his son to the basement:

Quote

Am I mistaken when most have claimed Alexei couldn't walk and this is why Nicholas II carried him?  Could Alexei walk?  Had he recovered by this time?   [Note: By recovery,  I assume this doesn't mean he was able to run and jump.]

AGRBear
Title: Re: Alexei and Hemophilia
Post by: ptitchka on December 29, 2004, 07:05:19 PM
Quote
In the book THE ESCAPE OF ALEXEI, SON OF TSAR NICHOLAS II by Petrov, Lysenho and Egorov they describe the claimant Vasily Filatov as having p. 122  "hemiparesis of the muscles", therefore, the IF family doctors had been in error saying Alexei had hemophilia.  

Can this hemiparesis have the same symtoms as hemophilia?]

Dear AGRBear:

The term 'hemiparesis' refers to paralysis on one side, and as such does not refer to anything having to do with hemophilia.  There may be some confusion here due to word roots and medical terms.  It has been said that during Alexei Nikolaevich's last episode of hemophilia in Tobolsk, 1918,  the affected limb was paralyzed.  Furthermore, after the Spala episode in 1912, what the newspapers of the time referred to as 'tuberculosis of the hip' owed itself to a retroperitoneal hematoma in the hip joint - one of the four sites in the body most likely to sustain complications if a bleeding episode involves that joint.  The Tsarevich did limp later  on.

However, hemiplegia refers to paralysis or spasticity involving one half of the body, and has nothing to do with blood disease.  I am a female quadriplegic and there's no way I could have hemophilia!



[Let me add here,   I think Filatov appears to have been too short to be Alexei,  however,  I am curious about their claim about the similarities of hemiparesis and hemophilia /haemohilia.

Thanks

AGRBear]

Incidentally -- DNA tests paid for by the Filatov family proved conclusively that their father/grandfather was not the Tsarevich.


[PS:

On another thread I was asking about Alexei's condition on the night of 16/17 July 1918 and why it was reported that Nicholas II carried his son to the basement:



It is safe to assume that Alexei Nikolaevich still could not walk that night.  In the Tsar's last diary entry a few days before Nicholas mentioned that his son could just put his foot down.  As to the assertion that the lad might in fact have been 120 pounds since he was taller than his father -- The boy had always been on the thin side.  For muscular, it might do to read 'wiry', nothing but muscles and nerves, and convalescent at that.  The Tobolsk episode had in fact also involved not being able to keep food down.  Alexandra Feodorovna reported that her son was 'terribly thin and yellow'.
Title: Re: Alexei and Hemophilia
Post by: AGRBear on December 29, 2004, 08:31:48 PM
What a great reply.

This answers a lot of questions all in one post.

As to his weight, well,  who knows for sure.  I was wiry as a kid and at 5'5''and  110 pounds which meant there was no fat whats-so-ever.... and Alexei at about 5'8'' would have been near death at 80 pounds,  I think.  Also,  when a sick person doesn't move around,  one doesn't lose weight  if still eating regular meals.....

Thanks.

AGRBear

PS:  Forgot to ask: "The Tobolsk episode had in fact also involved not being able to keep food down.  Alexandra Feodorovna reported that her son was 'terribly thin and yellow'."   Was this true of Alexei in June/July 1918 in  Ekaterinburg??
Title: Re: Alexei and Hemophilia
Post by: Belochka on December 29, 2004, 11:32:36 PM
Quote
Can this hemiparesis have the same symtoms as hemophilia?
AGRBear


Hi Bear,

Hemiparesis is a complication of a pre-existing condition. It is the motor weakness or paralysis seen down one side of the body. This condition is seen in a number of other pathologic conditions including stroke, encephalitis and head trauma (e.g. car accident).

Hemiparesis can be seen in patients suffering Hemophila, where there has been a spontaneous subdural (space between the skull and brain) hematoma.

In Alexei's case he did not suffer a subdural hematoma nor did he ever have a stoke. Alexei never experienced Hemiparesis.

Perhaps Mr Filatov did experience some degree of Hemiparesis following head trauma which produced his delusional imperial thoughts.

At least the family might receive some funds from the proceeds of that fictitious book.  ::)
Title: Re: Alexei and Hemophilia
Post by: missmoldavite on December 31, 2004, 06:18:48 AM
I was just wondering. The word "hemophilia" covers quite a broad range of blood mutations/deletions.
Is it posssible that Alexei suffered froma rare version of familial mediterranean fever. There is a rare version that is passed only from one parent. ie mother.
Its not a version that is even listed on the websites but it does exist.

Its all so very interesting isn't it?. ???
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on December 31, 2004, 10:15:29 AM
Quote
There is a rare version that is passed only from one parent. ie mother.
 I am not sure what you mean, as most hemophiliacs inherit this disease through the mother.
Title: Re: Alexei and Hemophilia
Post by: missmoldavite on December 31, 2004, 06:54:11 PM
To understand more suggest you look it up.
familial mediterranean fever. DEL M694.
its rather interesting. :)
Title: Re: Alexei and Hemophilia
Post by: Mandie, the Gothic Empress on December 31, 2004, 09:26:21 PM
My one of my teachers Mrs. Muir told me last year

A female can get hemophilia by 1% out 99% . Very ---Very rare for Females to be Hemophiliacs if the mother is a carrier and the fahter a hemophiliac himself.

A male can get by 50% out of 50% if the mother a carrier. Unsure if the fahter is a hemophiliac.? not sure.

In my studies I'm sure that Marie was a carrier. Pity  :'(
Title: Re: Alexei and Hemophilia
Post by: otmafan on January 01, 2005, 04:18:00 PM
Quote
My one of my teachers Mrs. Muir told me last year

A female can get hemophilia by 1% out 99% . Very ---Very rare for Females to be Hemophiliacs if the mother is a carrier and the fahter a hemophiliac himself.

A male can get by 50% out of 50% if the mother a carrier. Unsure if the fahter is a hemophiliac.? not sure.

In my studies I'm sure that Marie was a carrier. Pity  :'(


You're right Mandie, a female hemophiliac is rare, there has only been a few cases. She would die at in adolescences anyway.

If the father is a hemophiliac the daughter will automatically be a carrier. The son will not be affected because the father only has a defective X gene not Y.
Title: Re: Alexei and Hemophilia
Post by: Mandie, the Gothic Empress on January 02, 2005, 05:15:13 PM
Quote
What a great reply.

This answers a lot of questions all in one post.

As to his weight, well,  who knows for sure.  I was wiry as a kid and at 5'5''and  110 pounds which meant there was no fat whats-so-ever.... and Alexei at about 5'8'' would have been near death at 80 pounds,  I think.  Also,  when a sick person doesn't move around,  one doesn't lose weight  if still eating regular meals.....

Thanks.

AGRBear

PS:  Forgot to ask: "The Tobolsk episode had in fact also involved not being able to keep food down.  Alexandra Feodorovna reported that her son was 'terribly thin and yellow'."   Was this true of Alexei in June/July 1918 in  Ekaterinburg??
 


How tall was Alexei? someone said that he was taller then Nicholas?
Title: Re: Alexei and Hemophilia
Post by: Olga on January 04, 2005, 08:06:29 PM
Quote
She would die at in adolescences anyway.


Would a female haemophiliac die during menstruation?
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on January 04, 2005, 08:08:35 PM
Quote

Would a female haemophiliac die during menstruation?

That's a good question. My guess is no, because it is not the same type of bleeding, but I could be wrong...
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on January 04, 2005, 08:17:11 PM
I may be incorrect, but isn't hemophilia stricly a male disease? I didn't think females could be hemphiliac....
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on January 04, 2005, 08:49:53 PM
Quote
I may be incorrect, but isn't hemophilia stricly a male disease? I didn't think females could be hemphiliac....
FA, it's possible, if the father is a hemophiliac and the mother is a carrier... if the daughter inherits both those genes, she will be a hemophiliac. It is more common nowadays than back in the 19th century because most male hemophiliacs now live long enough to have children.
Title: Re: Alexei and Hemophilia
Post by: otmafan on January 04, 2005, 09:15:30 PM
Quote

Would a female haemophiliac die during menstruation?


From what I have heard, she would. It couldn't stop and she would bleed to death. There have only been a few cases, its really rare in females.
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on January 04, 2005, 09:21:23 PM
From American Journal of Medicine:

Severe factor VIII and factor IX deficiency in females.

Lusher JM, McMillan CW.

A survey of 11 hemophilia centers produced data concerning 28 females with extremely low levels of factor VIII or IX coagulant activity. Ten of the 28 have hemophilia A, six have hemophilia B, and 12 have severe von Willebrand's disease. The 16 females who have severe factor VIII or factor IX deficiency as an isolated defect exemplify several of the possible genetic explanations for the occurrence of hemophilia in females. All 16 bruise excessively, and several have had recurrent hemarthroses. Three of these girls, ages five, 10 and 23 years, have evidence of chronic hemophilic arthropathy. The 12 females with severe von Willebrand's disease are either homozygous for von Willebrand's disease or severely affected heterozygotes. All 12 have mucous membrane bleeding. In addition, five of the 12 have recurrent hemarthroses and three have evidence of chronic joint disease. However, the major problem in the adult females with von Willebrand's disease has been extreme menorrhagia. One of the seven adults underwent irradiation sterilization and another had a hysterectomy because of menorrhagia. The others have been managed with anovulatory drugs or plasma infusions and EACA. Despite menorrhagia, five pregnancies and deliveries have been uneventful in three of these women.

And a link with information about females with bleeding disorders:

http://www.hemophilia.ca/en/pdf/13/Clinic_Manual_Eng.pdf
Title: Re: Alexei and Hemophilia
Post by: investigator on January 10, 2005, 05:38:52 AM
I have often wondered how he felt about his disease.  I mean as he grew older he must have felt depressed because he knew he could not have a normal life.  I mean he could not play like a normal teenager.  Keeping in mind that his life was going to be short because of the disease.  And he would never be Tsar.  Did he think about these things? I know that Alexandra really protected him but still a person cannot ignore all this.  Please share your opinions.
Title: Re: Alexei and Hemophilia
Post by: Abby on January 10, 2005, 07:24:19 AM
I think he felt hampered by it and wanted nothing else but to be able to be active like a normal child. He probably despised all the fussing that was made around him - he seemed like an independent carefree kid!

I read that he was more compassionate toward others because of his disease, and it made him appreciate suffering.
Title: Re: Alexei and Hemophilia
Post by: Georgiy on January 10, 2005, 01:55:22 PM
And yet, of course, he knew no other life, as his disease was from birth, so to him it would have been 'normal' in a sense. Whether he knew or thought his life would be short or he'd never be tsar is speculation though. In her letters the Empress would often talk about how they had to be strong for Alexei so that when he is Tsar he won't have to rectify all their mistakes, that they must hand over a strong country to him etc. Of course she may have been deluding herself, not wishing to think that, 'Well, our son will probably die long before we ourselves do and will never reign.'
Title: Re: Alexei and Hemophilia
Post by: ptitchka on January 10, 2005, 08:20:05 PM
I think Alexei Nikolaevich had his faith in God going for him.  That's the short version.  The slightly longer one seems to be that while the boy did not like the restrictions his disease put on him ('Why can't I be like other boys?), he had more or less come to terms with it as a fact of life, something to be lived in spite of, something to be put up with and gone through.  God's will be done!  His patience, his tendency not to complain, and his compassion for others who suffered is well known and testified to
Title: Re: Alexei and Hemophilia
Post by: AlexeiLVR on January 15, 2005, 03:39:53 PM
i heard that Rasputin said that when Alexei would get older the Hemophilia would start getting better and better!

And it was true when he reached about age 12 he was starting to look less pailer(i dont no if dats a word) and his Hemophilis was slowly going away, so i guess he could of lived a long life!
Title: Re: Alexei and Hemophilia
Post by: Olga on January 15, 2005, 11:01:07 PM
Quote
i heard that Rasputin said that when Alexei would get older the Hemophilia would start getting better and better!



Codswallop. Grigori Yefimovich probably said this just to please the Tsar and Tsaritsa.

Quote
....and his Hemophilis was slowly going away, so i guess he could of lived a long life!


It wasn't going away. Haemophilia is incurable.
Title: Re: Alexei and Hemophilia
Post by: Belochka on January 15, 2005, 11:45:06 PM
Quote


Codswallop. Grigori Yefimovich probably said this just to please the Tsar and Tsaritsa.


It wasn't going away. Haemophilia is incurable.


Indeed, hemophilia is a condition for life. The only comforting consideration would have been that his episodes may have reduced in their frequency ... which is a normal consequence when sufferers mature with age. However he would probably have been aware that his life span would be reduced.

Rasputin not being medically trained was incapable of expousing learned medical opinions.  
Title: Re: Alexei and Hemophilia
Post by: AlexeiLVR on January 16, 2005, 03:56:11 AM
ya...well i read alot about Alexei, and in practicaly every explanation, it sais that his Hemophilia was slowly getting less dangerous!
Title: Re: Alexei and Hemophilia
Post by: Olga on January 16, 2005, 07:36:07 AM
But that doesn't mean it was going away.
Title: Re: Alexei and Hemophilia
Post by: Dashkova on January 16, 2005, 07:56:29 AM
Quote
i heard that Rasputin said that when Alexei would get older the Hemophilia would start getting better and better!

And it was true when he reached about age 12 he was starting to look less pailer(i dont no if dats a word) and his Hemophilis was slowly going away, so i guess he could of lived a long life!


Rasputin had nothing directly to do with Alexei's recovery from attacks.
Title: Re: Alexei and Hemophilia
Post by: AlexeiLVR on January 16, 2005, 01:40:31 PM
maybe not, but everyone thought he did! :-/
Title: Re: Alexei and Hemophilia
Post by: AlexeiLVR on January 16, 2005, 03:19:15 PM
well u no wat i meen Alex
Title: Re: Alexei and Hemophilia
Post by: Georgiy on January 16, 2005, 03:35:14 PM
If i remember correctly, he had his more serious attacks when he was older - Spala, the time he nearly died from a blood nose when at Stavka, and of course when they were in Tobolsk. Maybe as he became older though attacks would be less frequent as he would take better care of himself (not that he wasn't careful anyway). Little boys (and girls too) tend to get scrapes and bumps all the time.
Title: Re: Alexei and Hemophilia
Post by: Dashkova on January 16, 2005, 06:57:15 PM
Quote
If i remember correctly, he had his more serious attacks when he was older - Spala, the time he nearly died from a blood nose when at Stavka, and of course when they were in Tobolsk. Maybe as he became older though attacks would be less frequent as he would take better care of himself (not that he wasn't careful anyway). Little boys (and girls too) tend to get scrapes and bumps all the time.


Staying away from asprin helped, too. Rasputin's only (and very indirect) useful advice.
Title: Re: Alexei and Hemophilia
Post by: AlexeiLVR on January 16, 2005, 08:50:04 PM
i think his most serious attack to me was the one in Tobolsk! i just finished reading Anastasia's diary, and that accindent unabled him to walk until the murder! so he might of never walked again!
Title: Re: Alexei and Hemophilia
Post by: Annushka on March 01, 2005, 11:43:42 AM
When did it become public knowledge and how did it become public knowledge after the deaths of the family?  Was it because the family who knew about started talking about it afterward?

Holly
Title: Re: Alexei and Hemophilia
Post by: Baby Tsarevich on March 01, 2005, 02:15:23 PM
What do you mean? do you mean when did it become public of their death or Alexei's Hemophilia?
Title: Re: Alexei and Hemophilia
Post by: Annushka on March 01, 2005, 03:04:54 PM
Sorry for not being clearer. I meant when did it become public about his hemophilia.

Holly
Title: Re: Alexei and Hemophilia
Post by: Baby Tsarevich on March 01, 2005, 03:25:27 PM
I'm pretty sure it became public when Alexei was ill at Spala, because when everyone thought that Alexei was very close to death, the Tsar and Tsarina decided that they should tell Russia that the Tsarevich was close to death and why!

Everyone started praying for him all over Russia and then a priest came to Alexei and looked at him and said that a news bulletin should be given out the next day saying that the Tsarevich was dead. But that didn't happen because Alexei later recovered!

I hope that anwsered your question and if I'm wrong please correct me!

~*Anya*~
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on March 01, 2005, 03:57:22 PM
When Alexei was ill at Spala, they only published bulletins that he was gravely ill, "from a fall", but the exact nature of the hemophilia was indeed never revealed publicly at the time. Many people close to the court knew, and so it was not a total secret,but the vast majority of Russians did not know.  Yes, a death announcement was prepared for Alexei, but was not issued as he did recover after receiving the famous telegram from Rasputin.
Title: Re: Alexei and Hemophilia
Post by: Baby Tsarevich on March 01, 2005, 04:03:29 PM
I always thought that after Spala Russia knew that Alexei had Hemophilia, but i huess I was wrong! Thanks FA!

~*Anya*~
Title: Re: Alexei and Hemophilia
Post by: Annushka on March 02, 2005, 11:37:04 AM
It is my understanding that N&A were still hiding it while in captivity and that their captors did not know what was wrong with him.  Therefore, it had to come out sometime after the massacre.  My theory is that because the close family knew about it, that they started speaking about it publicly some time later.  But, I am curious about how it became public knowledge.

Holly
Title: Re: Alexei and Hemophilia
Post by: AlexeiLVR on March 07, 2005, 08:46:51 PM
that could be true, but so many people in the family and out knew about his condition so it had to spread, like practicaly no one can keep a secret like that in for long!
Title: Re: Alexei and Hemophilia
Post by: etonexile on March 21, 2005, 09:08:51 AM
As the "bleeder" descendants of Queen Victoria had haemophelia...It seems pretty likely that Alexei had it too...I wonder if this disease still pops up in the old Queen's family?
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on June 20, 2005, 01:17:45 PM
I recently discovered the following from the New York Times, November 10, 1912:
(http://www.alexanderpalace.org/palace/images/alexeinyt.jpg)
Title: Re: Alexei and Hemophilia
Post by: Tasha_R on June 21, 2005, 10:30:44 AM
And that was just around the time of the Spala incident, correct?  I thought I had read that in the other thread.

Sincere regards,
Tasha
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 21, 2005, 03:11:17 PM
To my knowledge the "h" word was not used in any of the dairies or letters of Nicholas and Alexandra. It is also my understanding as far as we know, Alexei's medical records do not exist.
Title: Re: Alexei and Hemophilia
Post by: Georgiy on June 21, 2005, 04:52:51 PM
There could be a simple reason why it is not mentioned in their diaries in that these were not 'private' documents meant only for their own eyes, but documents that would become State property, which is why you find little in the way of their deepest innermost thoughts in the diaries. The nature of Alexei's malady was not public knowledge, nor did his parents want it to be, though by 1912 it would seem it was a somewhat poorly kept secret.
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on June 21, 2005, 05:17:23 PM
The same is true for their letters. You will note that they numbered their letters to each other, because they knew that their personal correspondence would be put into the archives, thus they never wrote anything they did not want made public in their letters.
Title: Re: Alexei and Hemophilia
Post by: Belochka on June 21, 2005, 09:20:00 PM
Quote
To my knowledge the "h" word was not used in any of the dairies or letters of Nicholas and Alexandra. It is also my understanding as far as we know, Alexei's medical records do not exist.


I believe the medical records do exist.
Title: Re: Alexei and Hemophilia
Post by: AGRBear on June 22, 2005, 06:33:51 PM
I thought done of the medical records of Alexei survived.  Did they?  If so, where can they be found?

AGRBear
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 22, 2005, 08:27:00 PM
Quote

I believe the medical records do exist.

I did not know that. Does anyone know for sure?
Title: Re: Alexei and Hemophilia
Post by: Tasha_R on June 22, 2005, 09:20:26 PM
If they were accessible, *that* would be a very helpful document to look at!

Sincere regards,
Tasha
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 22, 2005, 11:32:56 PM
I don't think we know for sure such documents exist, do we?
Title: Re: Alexei and Hemophilia
Post by: AGRBear on June 23, 2005, 11:55:49 AM
Quote
....[in part]....

Apparently some of his medical journals were preserved and are in the Russian State Archives, we have seen a photocopy of one complete booklet.

....RRS


Over on the thread of Dr. Botkin I asked if any of the medical journals hold anything about Alexei.

AGRBear
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 23, 2005, 05:08:49 PM
It would be great if we could get our hands on a copy. I'm just not sure how to do that.
Title: Re: Alexei and Hemophilia
Post by: AGRBear on June 25, 2005, 03:30:01 PM
Here is Richard's reply on the another thread:

Quote
The one copy we have seen does not appear (at least to me) to refer to the Tsarevitch.
I can't say about the others that may be there. After all, as Chief Physician, he brought in Dr. Derevenko, a specialist in hematology.

I would be more interested in having them read by scientists who could tell if he were observing symptoms in the Empress's  conditiions (from time to time) that have since been identified today with Porfiria; and which may have afflicted A. as well.

RRS
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 25, 2005, 03:44:22 PM
here are some references I found.

"I had a long talk with Dr. Derevenki. He told me that the Heir was prey to haemophilia, a hereditary disease which in  certain families is transmitted from generation to generation by the women to their male chilrdern. Only males are affected. He told me that the slightest wound might cause the boy's death, for the blood of a bleeder had not the power of coagulating like that of a normal individual. Futher, the tissue of the arteries and veins is so frail that ane blow or shock may rupture the blood-vessel and bring on a fatial haemmorrhage."
Gillard: "Thirteen years at the Russian Court." pp. 37 & 38.


"The Czarevitch was in the schoolroom standing on a chair, when he slipped, and in falling hit his right knee against the corner of some piece of furniture. The next day he could not walk. On the day after the subcutaneous haemmorage had progressed, and the swelling which had formed below the knee rapidly spread down the elg. The skin, which wa greatly distended, had hardened under the force of the extravasated blood, which pressed on the nerves of the leg and thus caused shooting pains, which grew worse every hour.
".....Dr. Derevenko was anxious, as the haemorrhage had not been stopped and his temperature was rising. The inflammation had spread further and the pain was even worse than the day before." Golliard page 43.


"....As we were going on board the Czarevitch jumped at the wrong moment, and hs ankle caught the bottom of the ladder leading to the deck. At first I though this accident would have no ill effects, but towards the evening the boy began to be in pain and his suffering rapidly increased. Everything pointed to a serious crisis. Gilliard p. 97.

I'm sure those aren't all of Gilliard's references, but are some of the highlights. He does describe some syptoms. Will post more as I find more.
Title: Re: Alexei and Hemophilia
Post by: etonexile on June 26, 2005, 10:33:41 AM
AN seemed so healthy...when not in the midst of a haemophilia incident....or the recovery afterwards...I wonder if his poor,distracted parents were ever able to relax their worry and anxiety?...Towards the last....in the Urals...he seemed so ill....
Title: Re: Alexei and Hemophilia
Post by: Inquiring_Mind on June 26, 2005, 11:44:22 AM
Quote
AN seemed so healthy...when not in the midst of a haemophilia incident....or the recovery afterwards...I wonder if his poor,distracted parents were ever able to relax their worry and anxiety?...Towards the last....in the Urals...he seemed so ill....


No chronic illness escapes very real or even imagined anxiety. It just makes it worse.

Towards the end the day to day stress the family was living under had to hinder healing.
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 26, 2005, 06:48:28 PM
From what I know, I doubt it. It seemed they were always nervous about "the next fall" etc. They took so many precautions to assure his safety. Yet, while he was with his father during the War, he did very well I think.
Title: Re: Alexei and Hemophilia
Post by: Lizameridox on June 26, 2005, 07:39:20 PM
What an interesting point to bring up about Mogilev!  Thanks, Lexi!  I can imagine that the atmosphere anywhere around a very loving but overprotective mother might have been more stifling... Alexei's world had once been described in terms of female domination and cushioning.  What would it have been like hearing 'Don't do that, Sunbeam!'  'Be careful, Alexei!' 'Are you all right, Baby?' often enough?

While there were still bleeding episodes at the Stavka, some of which Alexei's diary and Nicholas' letters home mention in passing, there is no doubt that the lack of hysteria surrounding the boy must have done him a world of good.

Any rumors that Rasputin gave Alexei doses of aspirin or herbal infusions (possibly buffalo grass, which contains a form of coumadin) that brought on his bleeding episodes were strengthened by the fact that the Tsarevich thrived at Stavka, and later appeared to be so well at Tobolsk:  both places where Rasputin never was.
Title: Re: Alexei and Hemophilia
Post by: jcl on June 26, 2005, 07:41:57 PM
I am still confused as to the facts; how could a secret exist after the newspaper article? And when did it become public knowledge, before or after the massacre? I guess I am basically asking the same question as the first ppost from HollyMI, but want to know what the impact of the news article was.
Title: Re: Alexei and Hemophilia
Post by: lexi4 on June 26, 2005, 08:08:43 PM
Lisa,
I never knew about the rumors of the herbal infusions. Where did you get that? That is very interesting.
I think Alexei would have done a lot better without such a smothering mother. I think we have evidence of that.
Title: Re: Alexei and Hemophilia
Post by: Shvibzik on July 06, 2005, 11:13:05 AM
I know this is an odd question, but what would happen if Alexei was bit by a mosquito?  Was he even that fragile?  I've read he could have an attack even if he got a little scrape, so what would happen if he was bit by a bug? ???  
Title: Re: Alexei and Hemophilia
Post by: etonexile on July 06, 2005, 11:19:50 AM
Interesting question...odd...but interesting.....
Title: Re: Alexei and Hemophilia
Post by: Shvibzik on July 06, 2005, 11:33:01 AM
Did they have bug spray back then?  Or some lotion or something to keep them off maybe? :-/
Title: Re: Alexei and Hemophilia
Post by: Kimberly on July 06, 2005, 11:34:56 AM
Certainly is. Mosquitoes inject anti-coagulants with their bite,to prevent the blood clotting. Haemophiliacs these days must get bitten by the critters, wonder what happens to them
Title: Re: Alexei and Hemophilia
Post by: etonexile on July 06, 2005, 11:50:57 AM
I believe there are quite effective meds today to help these folk.....
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 08, 2005, 05:44:02 PM
The name speaks for itself. A rather depressing subject, but Im curious if there are any pics out there that fit into one of Alexei's attacks. Spala, Standart, etc.
Please and thank you.



sofi
Title: Re: Alexei and Hemophilia
Post by: clockworkgirl21 on November 09, 2005, 02:11:17 PM
(http://img229.imageshack.us/img229/7929/13909375276le.jpg)
Sorry it's so small, but this was during his Spala attack.
Title: Re: Alexei and Hemophilia
Post by: clockworkgirl21 on November 09, 2005, 02:19:07 PM
(http://img198.imageshack.us/img198/7828/191320livadia7ly3fb.jpg)
Here he is at Livadia, getting a mud bath to help his joints.
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 09, 2005, 03:59:36 PM
I found some more pictures of him when he had an attack. If you look closely, his left knee is bent in some of these photos, and his face is all scrunched up like hes in pain. Poor Alexei..

http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/00054003.jpg

http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/00024002.jpg

sofi ;D
Title: Re: Alexei and Hemophilia
Post by: Margarita Markovna on November 09, 2005, 09:45:49 PM
Aww...he looks so..helpless in the last one..
Title: Re: Alexei and Hemophilia
Post by: clockworkgirl21 on November 09, 2005, 10:14:09 PM
Russian Duchess, didn't Aleksey fall or something before that picture, and was in great pain, but assured Aleksandra he was okay because he didn't want her to worry?
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 10, 2005, 07:20:32 AM
Yeah, thats exactly what happened.
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 10, 2005, 01:58:17 PM
I was looking through my pics, so I could post more in this thread, and I found these, that I think were after his Spala attack?? Correct me if Im wrong, because he looks youngr than 8 years old here. Maybe taken from an earlier attack?

(http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/Spala.jpg)



This one is HUGE, thats why I had to insert the link and not the picture, but it was taken on the same day.
http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/1002265.jpg

See something along the lines of a leg brace on his right leg? How sad...

Sofi :'(
Title: Re: Alexei and Hemophilia
Post by: clockworkgirl21 on November 10, 2005, 05:27:07 PM
Aleksey had his leg in a brace after his Spala attack. I don't know of any other times he wore a brace.
Title: Re: Alexei and Hemophilia
Post by: Baby Tsarevich on November 11, 2005, 03:03:27 PM
I've herd or read somewhere (don't remember where) that those two pictures with him and Alix where taken during Spala, am I right?

~Anastacia~
Title: Re: Alexei and Hemophilia
Post by: matushka on November 11, 2005, 03:08:12 PM
Really? I thought they were taken at the same time that the ones of Alexandra Feodorovna with Anastasia. Do you remember such famous pictures? I do not remember that Alexei was particularly bad those days. And the room seems to be the Tsarskoe's Tsaritsa's room, not the Spala's one. Is that correct?
Title: Re: Alexei and Hemophilia
Post by: Baby Tsarevich on November 11, 2005, 03:29:44 PM
O yeah it does look like one of Alix's rooms in the Alexander Palace, thanks for pointing that out!

Could it have been taken after Spala?

~Anastacia~
Title: Re: Alexei and Hemophilia
Post by: grandduchess_42 on November 11, 2005, 05:06:14 PM
AW!! poor alexei... i feel so sorry for him. i wish i felt his pain so i know what he was in.

great pictures. by the way.
Title: Re: Alexei and Hemophilia
Post by: Sarushka on November 11, 2005, 09:25:21 PM
Quote
And the room seems to be the Tsarskoe's Tsaritsa's room, not the Spala's one. Is that correct?

Yes, that's the Imperial couple's bedroom in the Alexander palace. (You can tell by the pattern on the bedcurtians in the background).


I think I've got a photo somewhere of Aleksei standing in a leg brace. I'll see what I can find...
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 12, 2005, 12:52:05 PM
I saw that one in Beinecke and Im 100% sure that that was after Spala. I am going to look for it now.

Sofi :-*
Title: Re: Alexei and Hemophilia
Post by: matushka on November 12, 2005, 02:47:09 PM
I think it is before. Russian Duchess, where did you read this interesting story about those 2 beautiful pictures of Alexei on the Standart? Could you tell me your source? Thank you.
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 13, 2005, 01:00:34 PM
Here, Matushka:

http://members.aol.com/Dangit0/Alexei/prewwi.htm

Good luck!!

Sofi :)


Title: Re: Alexei and Hemophilia
Post by: matushka on November 16, 2005, 03:08:15 PM
Many thanks. Does anyone remember is this story from the Gilliard`s book?
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 16, 2005, 05:57:05 PM
Your Welcome!!
As for your question, I dont know, but check the link of the site I gave you for sources. I am not sure if the story is true because I have only read it on that site.

Sofi ;D
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on November 25, 2005, 09:28:14 AM
Dont worry, I found it, thanks to Sarushka!!

(http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/brace.jpg)

The leg brace is on his left leg. You can see how its bended.
Obviously, Alexei looks rather ill... :'(
It had to be after Spala.

Sofi
Title: Re: Alexei and Hemophilia
Post by: matushka on November 26, 2005, 06:52:44 AM
Yes, I think it is early 1913.
Title: Re: Alexei and Hemophilia
Post by: Baby Tsarevich on December 07, 2005, 10:30:58 AM
Is there anymore? ???
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on December 07, 2005, 11:05:11 AM
I don't think so, I mean, I don't think that his family would take pics of him like that,  :'(.
But here are some that were after an attack.

Bandaged Hand (http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/Copiede1000702.jpg)

In Bed in Tobolsk (http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/teainTobolsk.jpg)


Sofi :)
Title: Re: Alexei and Hemophilia
Post by: grandduchess_42 on December 22, 2005, 08:24:02 AM
aww poor baby  :'(

some times you can't be help feel sorry for him. just think if he lived longer then i think he would have used the new treatments that are available now that weren't available then.
Title: Re: Alexei and Hemophilia
Post by: Romanov_Fan19 on December 22, 2005, 02:18:44 PM
Poor  boy   :( :'(      he wouldve made a great  Emperor :)
at least  we can all  take comfort knowing hes in Heaven  and that he will live in Gods Kingdom  for Eternity  and there will be no more Afflictions of his body
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on December 22, 2005, 03:21:07 PM
I don't think that there are anymore pics of Aleksei with an attack of Heamophilia, but I am just about to scan a picture of him being carried by Derevenko, his unfaithful sailor-nanny.
Also, with Rasputin.
I gess these pics fit in the category of this thread :)
Title: Re: Alexei and Hemophilia
Post by: Russian_Duchess_#5 on December 22, 2005, 03:35:18 PM
Carried by Derevenko (http://i35.photobucket.com/albums/d179/Grand_Duchess_Romanov/SailorNannyDerevenko.jpg)
I think that you guys have seen this pic before, but there you go.
More scans to come...
Title: Re: Alexei and Hemophilia
Post by: Joy0318 on December 22, 2005, 09:00:46 PM
Quote
aww poor baby  :'(

some times you can't be help feel sorry for him. just think if he lived longer then i think he would have used the new treatments that are available now that weren't available then.


I feel that way too. When I think of how that poor boy suffered it just brings tears to my eyes sometimes.
:'(
Title: Re: Alexei and Hemophilia
Post by: grandduchess_42 on December 23, 2005, 08:25:56 AM
Quote

I feel that way too. When I think of how that poor boy suffered it just brings tears to my eyes sometimes.
 :'(


i to have that feeling. its so sad knowing that you couldn't have done anything to help him. you just had to wait.
think of the girls. reading or writing and hearing their brother screaming down the hall....  :'(

sofi! thats adorable...  he doesn't look to happy does he. he looks so cold!
Title: Re: Alexei and Hemophilia
Post by: Joy0318 on January 13, 2006, 11:18:19 AM
I've always thought about this myself. Of course we can only speculate but I think that as a young child he might have been a bit upset at times when he was not allowed to do all  the things his sisters did. I remember reading in N&A how he asked his mom for a bicycle and how she had to tell him that he couldn't. :( It had to be very hard on a young child.

As he got older though I think that he learned to accept the fact that he had hemophilia and would not be allowed to do some things that other boys could do. Maybe he did get discouraged at times but I think that his faith in God helped to get him through it and that he tried to live his life to the fullest. I do not think that he was depressed about it.

Thing I think He probably got tired of hearing were "Sunbeam, be careful!" or "Alexei don't do that!"  As he got older I'm sure he was aware of the things that might bring on an attack.
Title: Re: Alexei and Hemophilia
Post by: clockworkgirl21 on January 13, 2006, 02:44:47 PM
Do you think Aleksey really understood what was going on? My (step)cousin has hemophilia, and he says he didn't understand what that meant until he had 8th grade health class. He always knew getting cut was dangerous, but he never really knew what the disease was. (I'm always asking him about it, trying to figure out about Aleksey  ::) ) How much do you think Aleksey knew? I'm sure no one ever sat him down and told him, "You have a disease." Probably just, "You need to be careful."
Title: Re: Alexei and Hemophilia
Post by: Joy0318 on January 14, 2006, 02:03:20 PM
You bring up a good point here, clockwork girl. Sometimes I wonder just how much Nicky and Alix told Alexei about his condition.  Surely when he was very young they did not tell him much. A three or four year old would not understand what having hemophilia or a bleeding disorder meant. Maybe they just told him something like "you have to be careful not to bump or cut  yourself because you get hurt easier than your sisters." But as Alexei got older I'm sure he questioned his parents about his condition and I think that probably did eventually tell him the truth.  Just how much they told him I really don't know.  Did they tell him everything? Maybe. Maybe not.  Somehow I don't think they actually told him that the condition could be fatal. I think Alexei knew that he could die though. One of the passages in the N&A book that brings tears to my eyes is when Alexei says to Alix "Mama if I die it won't hurt anymore wiil  it.?"

We  really just don't know how much he knew. Maybe he knew everything. Maybe he knew very little.  Somehow I think he did know a lot about his condition and learned to live with it as best he could. I think he was a very brave young boy.
Title: Re: Alexei and Hemophilia
Post by: Eternal_Princess on January 16, 2006, 09:34:59 AM
I agree that he most proabably didn't even know that he had heamophelia, perhaps just that he had a blood disease.

As I recall correctly it was Alexandra who bemoaned that it must be hemophilia because it was rampant on her side of the family. But I believe they could never be sure it was that for certain, since Alexei did not have these spells constantly, (which we know now some hemophiliacs don't have spells constantly,) they could never be completely certain. All they could do is take all precautions that it was prevented in case it was hemophilia.

I believe Alexei was getting stronger, the attacks might just have been part of his growing pains, with all due respect I think he might have lived to at least fifty.

I certainly believe that it was not a very strong case of the disease if it was, and it was a third generation disease.

As for Alexei, I'm sure he was confused and unhappy over the whole situation of his life, but he managed to overcome his unhappiness as a child to be a brave young man. And I certainly believe he tried his best to not let the disease interfer with his everyday life.  
Title: Re: Alexei and Hemophilia
Post by: imperial angel on January 17, 2006, 11:11:22 AM
Whatever he thought he did know that he couldn't do certain things boys his age generally did, so no doubt he knew he was sick. The precise term may have alluded him, but he knew that it was dangerous, and that it could take his life. From this angle, it really doesn't matter if he knew the precise term or not,does it? As for feelings, about it, it might have frustrated him, because here was nothing that was visible, but it still prevented him from normal activities, and to any boy, that would be bad. But he was treated as being more special, too, and I am sure he enjoyed that. It seems he was accepting of it, more than some, and realized he must accomdate himself to it.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on February 02, 2006, 10:50:40 AM
I had not realized that all of a hemophiliac's daughters would be carriers before, that is very interesting.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on February 02, 2006, 10:58:51 AM
Well, for most of the world they were aware after that article, but I don't believe that article would have been read in Russia, at least past certain circles, because it was an American newspaper. But after the heir's illness in 1912, the year of the newspaper article, it seems everbody basically knew, even if they didn't say the word, and didn't acknowledge it directly. It was most likely in later years after 1918, that it could be acknowledged directly, but by then no one in Russia really cared, and the rest of the world acknowledged it long before. It seems it was an official secret in Russia, but it was something that was unoffficial knowledge. And it somewhat medically complex to explain, so it is hard to say if people understood the full medical implications. That is just my opinion, others are welcome.
Title: Re: Alexei and Hemophilia
Post by: Joy0318 on February 06, 2006, 06:42:52 PM
I've always thought that it was NEVER made public knowledge that Alexei had hemophilia. I always thought that it was kept a secret from even  members of the Russian nobililty and that only close family knew. Didn't they only announce that when Alexei was near death at Spala that he had fallen dangerously ill. A cause was never mentioned.

Sometimes I wonder why they wanted to keep it such a secret. I've always wondered if it wouldn't have been better for N&A just to let it be known that Alexei suffered from hemophilia than to have people speculate about what might be wrong with the boy.   But I guess they did have their reasons.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on February 07, 2006, 10:22:48 AM
It was kept as an official secret, and was regarded as such, but it seems some may have known, those close to the court, or they may have speculated that it was so, and thus basically known. It was never known to Russia in general, as Russians in general woudn't have read foreign newspapers, and even then it wasn't an official source so they may not have believed it. And it may have just existed at the level of speculation, were it certainly seemed true, but was not officialy known.. people might have, in speculating, assigned this cause to the illness.
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 04, 2006, 07:01:23 AM
I was just browsing around some websites and I came across a website that seems to disbelieve every fact to do with the whole IF murder and believes in every pretender going. ;)

However, there were some interesting points I thought I'd bring up.  One of the men pretending to be Alexei, I forget his name, died of some sort of bleeding disease similar to haemophilia, a disease that goes into remission.  Obviously the disease would have had to be in 'remission' at the time of the massacre, otherwise Alexei would have had no chance of surviving his injuries.  This pretender has caused some people on the website to claim that there is no real evidence that Alexei HAD haemophilia in the first place and that medical science could not have diagnosed similar bleeding diseases with the symptoms of haemophilia but separate from it at the time because they weren't known about, and so on.  It claims that there is nothing in Alexei's medical notes that categorically state he had haemophilia.

Now, I don't believe this one jot, largely because there was proven haemophilia in the family and Alexei's symptoms tally so completely with a diagnosis of haemophilia. To have a bleeding disease and for that disease not to be haemophilia is going to be pretty coincidental when there's already haemophilia in the close family network.  We know that Princess Alice definitely passed it on to her daughters, as Irene had haemophiliac sons too.  Now, unless we're saying that none of the affected members of the Royal Family actually had haemophilia and it's all a case of misdiagnosis, I can't see how Alexei could have had a bleeding disease and it not be haemophilia.  It would be too much of a coincidence.

However, what I am interested in is if there is any evidence whatsoever to substantiate this claim that Alexei did not have haemophilia, but some form of anaemia or a disease along those lines instead, that could have been 'grown out of' or gone into remission? I don't believe that there is, and everything on this other website that I read was not particularly convincing, but I'm just interested to know.  I thought it might bring a new, more 'intellectual' conversation to this board.

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on April 04, 2006, 09:13:05 AM
Quote
 I am interested in is if there is any evidence whatsoever to substantiate this claim that Alexei did not have haemophilia, but some form of anaemia or a disease along those lines instead, that could have been 'grown out of' or gone into remission? I don't believe that there is, and everything on this other website that I read was not particularly convincing, but I'm just interested to know.  I thought it might bring a new, more 'intellectual' conversation to this board.

Rachel
xx

Rachel,

Margarita (Belochka) and I, published an article in European Royal History Journal about this subject, which deals with the website and the claimant you mention. The article has information you are interested in. You can find this article online here:   http://www.geocities.com/mushkah/Hemophilia.html

Helen
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 04, 2006, 10:15:20 AM
It was, until Alexei nearly died at Spala.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 05, 2006, 10:38:47 AM
Well, I think the evidence is very favourable in the direction that he had hemophilia. Anyway, I had never realized that the New York times article was the first time the public really knew. I was aware that it was generally kept a secret, and wanted to know where that article fitted in. I was discussing this on another thread awhile ago.
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 06, 2006, 10:52:29 AM
I think the 'why didn't they tell the public' issue is one of those maddening 'what ifs' in history.

I wonder if they had come clean about Alexei's illness straight away, whether anything would have turned out differently. Would the public have been sympathetic, or would they have hated Alexandra even more for passing the disease on? If the public had been sympathetic, would Alexandra have been less stressed because she wouldn't have had the added pressure of it being a secret, and so less susceptible to mysticism, meaning that Rasputin would never had gotten his foot in the door in the first place? Would the family have been more popular all together if they had the sympathy of the public and so the revolution might never have happened as a consequence?

Or would nothing at all have been different because Alexei's illness was really small fry when it came to all of Russia's problems?

Interesting to think about.  I'd love to go back in time, do some tweaking, come back to the future again and see what my tweaking had done.  Wouldn't that just be amazing?

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 06, 2006, 11:45:15 AM
That is one of the more interesting what ifs of history, although unlike most ifs, I don't know really have an answer as to what could have been if they hadn't kept it a secret. The things you raise are though provoking, however, and it is possible things might have gone better if they had been open about it. I think perhaps one reason that they didn't was that they didn't want to make the future tsar out to be anything less than the sacred figure of the autocracy, so he coudn't have anything that would taint him. Perhaps they also feared that it would be a discredit to the Romanov Dynasty if it was known, and perhaps people who were not informed about the matter would think that it was even worse than it was, that is hemophilia. It is possible that Alexandra coudn't have dealt with this, especially as it would have been she that was most likely blamed. If it had not been the heir, but rather a second, third, son would they have been more open perhaps?
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 06, 2006, 12:18:01 PM
Mmm, that's a really interesting point, Imperial Angel. :)

The Tsar was God's representative on Earth, so admitting that his heir, also preumably ordained by God, had a life threatening illness, would slightly undermine the premise of the Tsar being this perfect, indestructible, totally dependable being.  I would imagine that Nicholas was afraid of having his perfect image tainted by this.  Also, Alexei having haemophilia would suggest a future of weakness and instability if he became Tsar, which would be something Nicholas would not want to project out of choice.

The decision to inform the public was made at a highly stressful time, and I wonder if the public would ever have been told if Alexei hadn't come so close to death at Spala.

I think that if Alexei had been a younger son then the worry would not have been as great for Alexandra, as obviously even though she was worried for her son's health, she was even more worried about Russia being left without a heir and the throne passing away from her and Nicholas' children.  I still don't think it would have been made public out of choice, for the reasons I mentioned before, but I don't believe that Alexandra would have become so religiously fanatical if Alexei had not have been her only son, and I don't think Rasputin would have been welcomed to court in that scenario.  

It is interesting to note though that Alexei was often seen in public being carried by Nagorny far beyond the age when being carried was acceptable.  I am surprised that the public did not become concerned or suspicious about this, and if they did, or if anything was said, what Nicholas and Alexandra offered as an excuse?


Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Georgiy on April 06, 2006, 10:37:24 PM
I don't think the tsar was God's "representative" on Earth. The Tsar was chosen by God, but in Orthodox thought, God is everywhere present and fillest all things. He doesn't need a representative. The Tsar was annointed ruler, in a ceremony that dates back to the (Christian) Roman Empire. Thus, the Tsar is (was) answerable to God for his rule over Russia as God entrusted that land to him. The idea of God having a Representative is, it seems to me, more a Roman Catholic form of thought, and resulted in the Pope being a 'Vicar' of Christ, one of the many differences between Orthodoxy and Catholicism.
Title: Re: Alexei and Hemophilia
Post by: Georgiy on April 06, 2006, 10:37:33 PM
I don't think the tsar was God's "representative" on Earth. The Tsar was chosen by God, but in Orthodox thought, God is everywhere present and fillest all things. He doesn't need a representative. The Tsar was annointed ruler, in a ceremony that dates back to the (Christian) Roman Empire. Thus, the Tsar is (was) answerable to God for his rule over Russia as God entrusted that land to him. The idea of God having a Representative is, it seems to me, more a Roman Catholic form of thought, and resulted in the Pope being a 'Vicar' of Christ, one of the many differences between Orthodoxy and Catholicism.
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 07, 2006, 03:41:36 AM
Oh thanks for setting me straight, Georgiy.  I had the 'Divine Right of Kings' idea in my head but obviously it was not the exact same situation in Russia.

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 07, 2006, 08:44:29 AM
What you posted, Rachel, in the first few paragraphs of your post answering me, is exactly what I was try to get out. I would wonder if Nicholas and Alexandra saw it this way, at least in part, or if there were other motivations. Alexandra was always a very private person, who liked to keep herself out of the public eye, and she never really felt at home in the Russian court. So she would not want such people having knowledge of her son's condition, and perhaps passing judgement on her for it, this could be one reason why it was kept secret for so long. I don't think they would ever have made it public had it not been for Spala,which required an explanation. If no explanation had been needed, then I doubt any would have been offered. It is natural and understandable to want to keep private family tragedies, such as Alexei's hemophilia was regarded. It is perhaps even more natural when you are Alexandra, in Russia, and your child is the only heir to the throne of your blood.
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 07, 2006, 08:52:19 AM
I'm glad I understood what you were saying, Grace. (I found out your name from another thread- hope you don't mind!)

I also think what you brought up about Alexandra being a very private person is an excellent point.  She liked to keep her children to herself and shelter them away from the court life at St Petersburg, plus she was only really herself with people she knew well.  Sharing her personal tragedy with the public would have been abhorrent to her knowing how private she liked to keep her family life.  Plus, sharing secrets about her children, who she tried so hard to keep to herself, would have been something Alexandra would have done everything in her power to avoid, I would imagine.

It must have been a terrible quandary to be placed in. Tell the public and you either get sympathy or hatred, and you can't predict which.  You either tell them and have some of your problems solved, or tell them and get even more problems.  I'm not surprised they chose not to tell until it became absolutely necessary; it wasn't worth the risk of Alexandra's vilification.

Rachel
xx

Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 07, 2006, 10:21:38 AM
It certainly was understandable that they didn't tell until they had to. If they hadn't had to offer an explanation, they most likely would have chosen not to say anything as they were so many worries about telling, all of which are true.  They didn't know the reaction, if it would weaken the public image of the Romanov Dynasty particularly in Russia, or if it would result in Alexandra being regarded more coldly than she was, and she was perhaps regarded as coldly enough. They wanted to do the best for themselves, the dynasty, and Alexei, and they didn't know the reaction. Perhaps whatever they did, they were damned, because it was a fact they coudn't escape-Alexei's hemophilia, or as it was known bleeding disease. I believe they tried to keep secret from all but close family members as well, even Pierre Gilliard wasn't aware at first, I believe.
Title: Re: Alexei and Hemophilia
Post by: Natasya on April 07, 2006, 07:38:43 PM
Pierre Gillard knew something was obviously wrong, but didn't know exactly until Spala.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 09, 2006, 08:20:05 PM
Yes, that's when it became not so secret knowledge about what exactly his illness was. Most people closely around them had some inkling that he had some illness before that, but weren't exactly sure what.
Title: Re: Alexei and Hemophilia
Post by: kaleema on April 18, 2006, 11:42:37 AM
Let's get some of this straightened out.


DNA was not dicovered until after the 1930's. Nor were the tests. Back when the Imperial family was still alive, they would summerize all the similar diseases as the same even if there were some differences.

To this I ask, have you ever seen the show "House"? They would write down the symptoms, and go through countless numbers of diagnoses. This is only different in the fact that some diseases had not been understood and thus were thought to be something different.


You must also remember that the memoirs that are constantly analyzed were meant to be PRIVATE. They were never meant to be read by members of the public. How many mothers do you think will exaggerate things that have happened to their offspring?

I ask now, how many of you have a background knowledge in genetics? Factor VIII is a clotting factor not the platelet. The clotting factor is most likely a hormone of sorts; a combination of bonds between carbon and other atoms to make a compound. Do you know the likelihood of two rare blood diseases being in the same family? The royal family is a geneticist's worst nightmare and also their best example at the same time. It is primarily studied because the gene pool had been isolated for several generations. It is the best example for why marrying into one's own family is not a good thing.


Alexei was a young boy. Bruising happens not spontaneously with them. They are normally the cause of them.
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 18, 2006, 12:57:44 PM
Kaleema, I don't understand what point you are trying to make.

We know Alexei had haemophilia.  There's no real question about it.  Are you agreeing with that, or questioning it? I could quite make out what you were trying to say in your post.

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 18, 2006, 05:03:48 PM
I am with RaRa. Kaleema you post makes little to no sense. You post from British columbia Canada, but is English not your first language maybe?

I have spoken to some of the finest haemotologists in California and asked them about the subject. Alexei had classic haemophilia in their opinion. We know that the female carriers descended from Victoria passed it along, nobody questions that.

Only the claims of one non-scientist supporting the Tamnet claim even refute it, yet elsewhere in the Forum you can read the scientific proof also dispel even these claims.  

Go read the 1912 New york times article for yourself, they got it right.
http://www.alexanderpalace.org/palace/img/alexeinyt.jpg

Of course if you have some specific scientific evidence, please do share it.

Title: Re: Alexei and Hemophilia
Post by: kaleema on April 19, 2006, 01:12:37 PM
Back when that article was written, in most cases, any blood disease was generalized as haemophilia. This included to what happened at Spala. One must remember that medical pracitices and the diagnosis of diseases that were not fully understood back then have now been looked at "under a microscope".

To be honest, I never read the New York Times. For news stories, I might believe it. However, for articles that are 96 years old, I wouldn't take with a grain of salt.


In school (post-secondary), we are taught that if we are looking for any reference for a paper, we are to look for an article that has been peer-reviewed. Also, it is also highly recommended that we look for the most recent publication date. In this regard, that article is not valid in my eyes.

With new pieces of information, we are able to correct what has been handed down in history. This includes everything from Egypt to Medicine. For example, Hysteria was thought to only occur in women, and were cured by hystrectomy. We know now that this was not the case.

Then again, at that time, the men were doctors, and any sickness was blamed on the women. How is this different?

Society has come a long way, but for some reason, people like to hold on to things that they think was true then and still do. They are not willing to change. Yet, change will occur, no matter what.


I never did believe that he had haemophilia, but I do know that it was a blood diesease of some sort. I'm not like other people. I think for myself, not by what others think. By this, I'm trying to set examples, not only to my peers, but also to my elders, who are currently set in stone in their thinking.
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 19, 2006, 01:51:57 PM
Well, Kaleema, it's all very well questioning beliefs held almost a century ago and going back over them from a modern point of view, but there really is NO evidence to suggest that Alexei did not have haemophilia.

Haemophilia was KNOWN to be in the Royal family.  Queen Victoria passed it on to her son Leopold, and two of her daughters, Princess Alice and Princess Beatrice, were carriers, as they passed it on to their children.

Princess Alice was the mother of Empress Alexandra.  Alexandra's brother Frittie had haemophilia and died of it at the age of 3.  Alexandra then went on to have her own haemophiliac son, as she inherited the carrier gene from her mother.

It would be coincidental to the point of being unbelievable for a son of Alexandra to have had a bleeding disease and it not be haemophilia, when haemophilia was so obviously evident in the family and it had a direct maternal source.  Are you trying to say that NO members of the Royal family actually had haemophilia at all? Because to say Alexei didn't have haemophilia but to admit that haemophilia was evident in Alexandra's family is really a bit silly.  It would be virtually impossible for ALL of the diagnoses of haemophilia in the Royal family to be wrong and for Alexei to have suffered from a bleeding disease that wasn't haemophilia.  

Yes, I agree, a lot of medical knowledge was primitive at the time and it has advanced a lot today.  However, Alexei fits every criteria of haemophilia and it has only ever been suggested by conspiracy theorists trying to 'prove' that Alexei could have survived, that he did not suffer from haemophilia.  It is rather generalised to say that 'all' medical professionals at the time 'lumped together' different kinds of diseases; I don't think they were that ignorant as to call all bleeding diseases haemophilia.  That's not a very water tight theory.

Please don't come on here trying to say that Alexei didn't have haemophilia and that everyone is wrong without some evidence to back up your claim.  I'll be all ears if you can say that you have a research paper from a medical professional with some information that suggests Alexei's disease was not haemophilia, but I suspect you do not.  None of us on here are stupid and blindly follow what we read in books, which seems to be what you're implying.  A little bit of logical thinking will get you to the consensus that Alexei had haemophilia regardless of what you read.

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 19, 2006, 02:39:51 PM
Quote
Back when that article was written, in most cases, any blood disease was generalized as haemophilia. This included to what happened at Spala. One must remember that medical pracitices and the diagnosis of diseases that were not fully understood back then have now been looked at "under a microscope".

To be honest, I never read the New York Times. For news stories, I might believe it. However, for articles that are 96 years old, I wouldn't take with a grain of salt.


In school (post-secondary), we are taught that if we are looking for any reference for a paper, we are to look for an article that has been peer-reviewed. Also, it is also highly recommended that we look for the most recent publication date. In this regard, that article is not valid in my eyes.

With new pieces of information, we are able to correct what has been handed down in history. This includes everything from Egypt to Medicine. For example, Hysteria was thought to only occur in women, and were cured by hystrectomy. We know now that this was not the case.

Then again, at that time, the men were doctors, and any sickness was blamed on the women. How is this different?

Society has come a long way, but for some reason, people like to hold on to things that they think was true then and still do. They are not willing to change. Yet, change will occur, no matter what.


I never did believe that he had haemophilia, but I do know that it was a blood diesease of some sort. I'm not like other people. I think for myself, not by what others think. By this, I'm trying to set examples, not only to my peers, but also to my elders, who are currently set in stone in their thinking.


Well, first of all, I wish you would subscribe to your own words. PLEASE present the peer-review articles to support your broad-brush sweeping, and incorrect assertions:
1.Back when that article was written, in most cases, any blood disease was generalized as haemophilia
2.One must remember that medical pracitices and the diagnosis of diseases that were not fully understood back then have now been looked at "under a microscope".

and what does : For example, Hysteria was thought to only occur in women, and were cured by hystrectomy. We know now that this was not the case. have to do AT ALL with the discussion of haemophilia.

The first modern description of haemophilia is attributed to Dr. John Conrad Otto, a physician in Philadelphia, who in 1803 published a treatise entitled "An account of an haemorrhagic disposition existing in certain families." He clearly appreciated the three cardinal features of haemophilia: an inherited tendency of males to bleed. Otto traced back the pedigree of the family he studies, to a woman who had settled near Plymouth, New Hampshire, in about 1720. However, the first use of the word "haemophilia" appears for the first time in an account of the condition written by Hopff ("Uber die haemophilie oder die erbliche Anlage zu todlichen Blutungen"), a pupil of Schonlein at the University of Zurich, in 1828. A full accurate description of the disease, including the unique mode of inheritance was made in 1820 by Nasse. The involvement of the joints as a characteristic symtom of the diease was described by Konig in 1890.  Generational studies following the inheritance of haemophilia in families was documented in peer review literature in 1813 (Hay), 1885 (Osler) and 1908 (Pratt).  In 1909, Bulloch meticulously traced haemophilia across all of the Royal Houses of Europe, and worked with Fildes in that year to define and stabilise the concept of Haemophilia according to symptoms, inheritance and sex incidence. In 1910 the Scot Addis in Edinburgh further associated the lengthy clotting time with the disease, and even found that the factor that would allow haemophilic blood to clot normally.  (The history of haemophilia.
Ingram GIC. Journal of Clinical Pathology 29: 469-479 (1976)
 Queen Victoria had no ancestors with the condition but soon after the birth of her eighth child, Leopold, in 1853 it became evident that he had haemophilia. Queen Victoria was thus an example of how the condition can arise as a spontaneous mutation. Leopold's medical condition was reported in the British Medical Journal in 1868, and it is clear that he was troubled by bleeds occurring at least once a month. He died at the age of 31 in 1884 from intracerebral haemorrhage after a fall. Leopold had married two years before his death. His daughter, Alice, was an obligate carrier and also went on to have a haemophilic son. Rupert, Viscount Trematon, was born in 1907 and died at the age of 21, also from an intracerebal haemorrhage. It also subsequently transpired that two of Queen Victoria's own daughters, Alice and Beatrice, were carriers of haemophilia. The condition was transmitted through them to several Royal families in Europe, including Spain and Russia.( Queen Victoria's gene: haemophilia and the Royal family.
Potts DM & Potts WTW. Publ. Alan Sutton Publishing 1995.ISBN 075090868
)

The only "genuine" change according to the literature in diagnosis of heamophilia is the distinction between Type A and Type B of the disease, and advances in understanding the root cause of the disease, however the literature is clear that the disease ITSELF was well understood by 1912. (Ingram, supra.  

I look forward to your own peer review evidence citations.
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 19, 2006, 03:22:06 PM
Quote
In school (post-secondary), we are taught that if we are looking for any reference for a paper, we are to look for an article that has been peer-reviewed. Also, it is also highly recommended that we look for the most recent publication date. In this regard, that article is not valid in my eyes.

"Haemophilia was an important contributing factor in the fall of the Romanov dynasty, thereby affecting the history of the Russian Empire as well as the history of the world at large. The occurrence of haemophilia in the reigning houses of England, Germany and Spain also influenced the course of events in these countries".
S Afr Med J. 1981 Jul 25;60(4):143-4.

THE HISTORY OF HAEMOPHILIA IN THE ROYAL FAMILIES OF EUROPE  British Journal of Haematology
Volume 105 Page 25  - April 1999
doi:10.1111/j.1365-2141.1999.01327.x
Volume 105 Issue 1


"Haemophilia is a bleeding disorder which has always attracted wide interest both among physicians and the laity--uncontrollable haemorrhage, blood that fails to coagulate and heredity with only males affected. The disease is probably best known to the public through its appearance in European royal families and in the Russian Imperial family." Nilsson, I.M.,  Sydsven Medicinhist Sallsk Arsskr. 1994;31:33-52.

"The authors trace the spread of the haemophilia gene from Victoria to the other royal families and speculate about the role that this inherited disease may have played in events leading up to the first world war and the Russian and Spanish revolutions.
Haemophilia was responsible for the early deaths of several princes, and also affected the heirs to the Russian and Spanish royal thrones." "is well worth reading" BRITISH MEDICAL JOURNAL, BMJ 1995;311:1106-1107 (21 October)   review of "Queen Victoria's Gene: Haemophilia and the Royal Family"
Helen M Kingston , D M Potts, W T W Potts Alan Sutton, pp 160 ISBN 0 7509 0868 8


 Pharmaceuticals Policy and Law Volume 7 / 2005,2006 Pages: 91 - 92

"Queen Victoria inadvertently initiated the malady of hemophilia in the royal houses of Britain, Russia, Prussia, and Spain..." Famous people and genetic disorders: From monarchs to geniuses - A portrait of their genetic illnesses
Nicola C. Ho 1 *, Susan S. Park 2, Kevin D. Maragh 2, Emily M. Gutter 3
1Johns Hopkins Medical Institutions, Baltimore, Maryland
2Department of Biological Sciences, Johns Hopkins University, Baltimore, Maryland
3Department of Biological Sciences, Ohio University, Athens, Ohio
published in: American Journal of Medical Genetics Part A
Volume 118A, Issue 2 , Pages 187 - 196, 2003.


Hemophilia as it affected members of the English, Prussian, Spanish and Russian Royal houses:
Hemophilia treatment in historical perspective: a review of medical and social developments
F. R. Rosendaal1, 2, C. Smit1, 2 and E. Briët1, 2
(1)       Department of Hematology, Department of Clinical Epidemiology, University Hospital Leiden, The Netherlands
(2)       Netherlands Hemophilia Society, Building 1, Co-P-46, P.O. Box 9600, NL-2300 RC Leiden, The Netherlands
Annals of Hematology
Publisher: Springer Berlin / Heidelberg
ISSN: 0939-5555 (Paper) 1432-0584 (Online)
DOI: 10.1007/BF01714977
Issue:  Volume 62, Number 1
Date:  February 1991
Pages: 5 - 15

Shall I continue??
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 19, 2006, 08:51:43 PM
Hemophilia is well known for its effect on the royal houses of Europe. Queen Victoria, a clinically normal
carrier, had one son, Leopold, who had hemophilia and two daughters, Alice and Beatrice, who were carriers and who, in turn, transmitted the disease to the Russian, Prussian, and Spanish royal families. Since the two X-linked hemophilias are clinically indistinguishable and none of the descendants of Queen Victoria who were known to be affected are alive (the last one, Waldemar, died in 1945), we may never know which type of hemophilia they had.
The Hemophilias—From Royal Genes TO Gene Therapy. Pier M Mannucci, Edward GD
Tuddenham New England Journal of Medicine 344:2323, 6/2001.


********

Femoral neuropathy due to retroperitoneal bleeding. A red herring in medicine complicates anticoagulant therapy and influences the Russian Communist Revolution (Crown Prince Alexis, Rasputin).


Willbanks OL, Willbanks SE.

Femoral neuropathy occurs when occult retroperitoneal bleeding impinges on the appropriate nerve roots. The syndrome involves the acute onset of groin and thigh pain with characteristic flexion and external rotation of the hip. It may mimic other conditions such as acute arterial occlusion. Thorough knowledge of the anatomy of the femoral nerve explains the clinical features and leads the clinician to suspect the occurrence of this syndrome. Three cases have been reviewed that exhibited this condition as a result of retroperitoneal bleeding, a complication of systemic heparin therapy. The hemophilia that afflicted Alexis, the Crown Prince of Russia and son of Tsar Nicholas and Tsarina Alexandra, resulted in this clinical syndrome.
American Journal of Surgery 1983 Feb;145(2):193-8.
Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on April 21, 2006, 12:52:17 AM
Some pople here divides things in white or black. We are NOT analizing Heino Tammet's claim here, but if Alexei had hemophilia or not.  And this last point is quite clear to me: Alexei suffered from hemophilia. That's for sure. All the symptoms shows it clearly. If you can go to a library to read any hematology book, you'll find that the Tsarevitch had the same disease than other of his male relatives in Queen's Victoria's side.

The symptoms of his disease are NOT those of the thrombocytopenia or other blood disease, but those of hemophilia. The "hemarthorsis" is a trouble caused by hemophilia, and it's a distinctive symptom of it. Thrombocytopenia didn't have hemarthrosis as a characteristic.

We can discuss deeply in other threads ("Survivors" or "Claimants", but not this one) if Alexei could have survived suffering fom hemophilia (this is another issue) after the shots in the Ipatiev house. But it's clear that he had hemophilia.The clinic history of his mother's family and his own, show this more than clearly.

RealAnastaia.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 21, 2006, 08:53:55 AM
There is alot of research to back up the fact that what Alexei had was hemphophilia, and not another bleeding disease. You are obviously ignoring the history of his family, and the evidence, and research, from later on, when people were objective to say that he did not have hemophilia. There is much more evidence than a contemporary newspaper article, which is actually from a reputuable newspaper, and to say that this is the only evidence is false. There is alot more recent, and informed evidence out there about his hemophilia, and actually that is when almost all of any writing about Alexei having hemophilia is from. But people can believe what they wish-nothing is certain, but there is much to prove Alexei had hemophilia.
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 22, 2006, 01:39:27 AM
"Numerous others have helped with my understanding of this story... whether they realize it or not.  Russia's Dr. Pavel Ivanov appeared to mistake me for a fellow scientist the first time that we spoke on the telephone.  He hasn't answered my letters now since September 1995.  The late Dr. William Maples at the University of Florida stopped talking the year before that.  England's Dr. Peter Gill sent photocopies of his 1994 NATURE GENETICS article without ever saying a word."

http://www.npsnet.com/tsarevich_alexei/page37.html  


Taken from Mr Kendrick's website @ p 37 regarding the Vancouver imposter.

Nothing further needs to be said.

Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on April 22, 2006, 11:48:16 PM
Quote
"Numerous others have helped with my understanding of this story... whether they realize it or not.  Russia's Dr. Pavel Ivanov appeared to mistake me for a fellow scientist the first time that we spoke on the telephone.  He hasn't answered my letters now since September 1995.  The late Dr. William Maples at the University of Florida stopped talking the year before that.  England's Dr. Peter Gill sent photocopies of his 1994 NATURE GENETICS article without ever saying a word."

http://www.npsnet.com/tsarevich_alexei/page37.html  


Taken from Mr Kendrick's website @ p 37 regarding the Vancouver imposter.

Nothing further needs to be said.



We are not discussing Dr. Kendrick skills here, even if I don't believe any of his "scientific" infos.  We are discussing if Alexei had haemophilia (or hemophilia, I saw the word written in two different forms) or not. His symptoms MATCHS exactly the ones of haemophilia...So, the tsarevich had this blood disease and not any other. The genetic story of her mother's family is there to witness what I'm saying.

We are not discusing if an haemophiliac boy could have survived from a shot in a small cellar; we are not discussing if Heino Tammet was Alexei. We are discussing if Alexei had haemophilia or not. And for me is a concrete evidence that he suffered from haemophilia. Dr. Kendrick must know if he is a scientific, as he claims he is, that Alexei symptoms could be not other than this blood disease.

This man does as much other persons I knew uses to do: as he believes that Mr. Tammet IS Alexei and he must demonstrate to his "public" that a survival was possible, he must show that Tammet had not haemophilia...Sure. Nevertheless, the disease he choosed in order to show that he suffered from another blood disorder (thomocythopenia) didn't match Alexei symptoms.

Those kind of attitudes doesn't help a bit to discover the truth behind the facts.

Alexei could have survived the shots or not...but he had haemophilia. And this is for sure.

RealAnastasia.
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 23, 2006, 12:31:45 AM
Quote

We are discussing if Alexei had haemophilia (or hemophilia, I saw the word written in two different forms) or not.

.... We are not discusing if an haemophiliac boy could have survived from a shot in a small cellar; we are not discussing if Heino Tammet was Alexei.

... Dr. Kendrick must know if he is a scientific,

RealAnastasia.

Quote
Only the claims of one non-scientist supporting the Tamnet claim even refute it, yet elsewhere in the Forum you can read the scientific proof also dispel even these claims.  

Of course if you have some specific scientific evidence, please do share it.


The center of this entire discussion DOES revolve around the myth that the Tsesarevich suffered from some other condition.

The Vancouver imposter died as a mature adult and was never medically assessed to have suffered from hemophilia.

The real questions are why must Mr Kendrick continues to maintain this tired myth? If this journalist resided not in Vancouver but in Winnepeg, would an "Alexei" have emerged there instead?
  ;D
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 23, 2006, 12:36:39 AM
Quote
Back when that article was written, in most cases, any blood disease was generalized as haemophilia.  

Mr K,

Does this mean that leukemia was also "generalized as hemophilia"?

Could you be so kind and cite a reputable reference from a peer reviewed Hematology J. to accord with your statement that "any blood disease was generalized as haemophilia".

I understand that leukemia was Tammet's cause of death.
  :o
Title: Re: Alexei and Hemophilia
Post by: Helen_Azar on April 23, 2006, 08:41:10 AM
Quote
Quote
"Dr. Kendrick must know if he is a scientific..

RealAnastasia, I am just curious, how come anyone who supports any claimant immediately gets an honorary doctorate from you? I noticed that you do the same thing with Dick Schweitzer, referring to him "Dr Schweitzer". Neither one of these men are doctors...  
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 23, 2006, 04:28:44 PM
Quote
Quote
Back when that article was written, in most cases, any blood disease was generalized as haemophilia.  

Mr K,

Does this mean that leukemia was also "generalized as hemophilia"?

Could you be so kind and cite a reputable reference from a peer reviewed Hematology J. to accord with your statement that "any blood disease was generalized as haemophilia".

I understand that leukemia was Tammet's cause of death.
  :o


Dear Belochka

I am not Kaleema!  I never use an alias.  Kaleema is an entirely different person who is entitled to express her own opinions.  If you have a comment to make in reply to Kaleema's posts, then please address them to Kaleema.

Please stay on topic... the question of Alexei's medical diathesis.

And if you must quote something of mine that is related to the topic of this thread, then I would suggest that you start here:

"If we are to accept the popular diagnosis of history and call it a clotting factor deficiency, then the boy's now famous sudden recoveries will remain a complete mystery.  The so-called "Mad Monk" Rasputin, as a direct result of the revolutionary propaganda of the time, is then overblown into a larger-than-life legend.  If, however, we are to change the diagnosis and call it a platelet disorder, then the air is let out of the legend, and Rasputin is revealed to have been nothing more than a very ordinary middle-aged Siberian hippie who did not possess any healing powers at all."

From the peer-reviewed American Journal of Hematology, Vol. 77, No. 1, pages 92-102, September 2004.

JK

P.S.  To answer your earlier question:  
Even if I had lived in Winnipeg, Tammet-Romanov would still be here in Vancouver.  Some other poor soul would be then reporting his story and having to endure your jibes.
Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on April 23, 2006, 07:53:08 PM
Quote
Quote
Quote
"Dr. Kendrick must know if he is a scientific..

RealAnastasia, I am just curious, how come anyone who supports any claimant immediately gets an honorary doctorate from you? I noticed that you do the same thing with Dick Schweitzer, referring to him "Dr Schweitzer". Neither one of these men are doctors...  


Sorry, Mr. Kendrick. The trouble comes for I'm from Argentina. In my country , people who gets a lawyer certificate is called "Doctor",as well as some other high universitary degrees. We have "Doctors in Medicine", "Doctors in Lawyer's affaires" and so on. Since Mr. Schweitzer is a lawyer, I supposed it was correct to call him "Doctor". My English is pretty bad, and one of the most difficult thing to learn are titles and diplomes. For example: in my country there is not the title of "Senior". We have Doctors and Licenciates (Licenciados).

I did not give any "honoris causa" doctorate to Mr. Schweitzer, I only believed that I can call him as we call lawyers in my country. Sorry again.

And...now, it is me who am curious. Which other claimant supporter I entitled as "Doctor"?  Peter Kurth? I don't think I ever called him "doctor". I always referred to him as "Peter". Penny Wilson? She supposes that someone could have survived the shots in the cellar, but she is not an Anna Anderson supporter. She doesn't believe she was Anastasia and doesn't support any particular claimant. I call her "Penny" any way...Greg King? He has the same ideas than Penny, and I call him Greg. Joseph Douaigues, the Spanish man who claims to be María Nicholaievna's grandson? I left few post at the "María Martí Thread" and wrote to him three times asking about his case, calling him "Mr. Douaigues" (Señor Douaigues, since I wrote to him in Spanish). I never had any contact with "Granny Alina" descendants, no with other pretenders supporters.

My reasons to name Mr. Schweitzer politely (I didn't know I was giving a wrong title to him) is that he is an elderly man and I can't treat he same way an elderly person than a young one. I learned this from my family since I was little and won't change this now.

And if I called you Doctor is for the same reason I entitled Mr. Schweitzer the same way. I don't know you, you never emailed me privately. So, as a sign of respect, I must call you with your title. I supposed you were Doctor. So, forgive me.

RealAnastasia.

Title: Re: Alexei and Hemophilia
Post by: Belochka on April 24, 2006, 12:33:23 AM
Quote
And if you must quote something of mine that is related to the topic of this thread, then I would suggest that you start here:

"If we are to accept the popular diagnosis of history and call it a clotting factor deficiency, then the boy's now famous sudden recoveries will remain a complete mystery.  The so-called "Mad Monk" Rasputin, as a direct result of the revolutionary propaganda of the time, is then overblown into a larger-than-life legend.  If, however, we are to change the diagnosis and call it a platelet disorder, then the air is let out of the legend, and Rasputin is revealed to have been nothing more than a very ordinary middle-aged Siberian hippie who did not possess any healing powers at all."

From the peer-reviewed American Journal of Hematology, Vol. 77, No. 1, pages 92-102, September 2004.

JK

Thank you for your clarifications Mr Kendrick.
 
"Historic Perspectives" presented in scientific journals are customarily extended to persons outside the medical community as "guests" by invitation whose articles are not based on solid laboratory research, but only offer a generalized discourse that is not subject to peer review.
 
Such a category of publication falls outside of the parameters to which scientists are normally subjected. Peer review is a standard procedure that normally ensures that new research claims can be questioned with regard to the methodology used, ensuring the reproducibility of similar results by other professional colleagues in the field. Such a practice assists in the advancement of credible medical scientific inquiry. Historic Perspectives are just that, by definition, they do not advance scientific inquiry.
 
The majority of hard working laboratory scientists must adsorb masses of documents each week. Due to time constraints they essentially only focus upon their field of interest. From experience any articles that fall outside one's specific interest are simply ignored; if only because of the magnitude of publications available on the library shelf each week.
 

Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 24, 2006, 12:03:43 PM
Quote
Thank you for your clarifications Mr Kendrick.
 
"Historic Perspectives" presented in scientific journals are customarily extended to persons outside the medical community as "guests" by invitation whose articles are not based on solid laboratory research, but only offer a generalized discourse that is not subject to peer review.
 


Nice try, Belochka, but rest assured that this article was fully subject to peer- review, just as any other paper that is submitted to the journal must be.  The Journal's editor who had put this same paper to review is a professor of Hematology/Oncology at Emory University in Atlanta.

The article was originally destined to be published in the category of "Brief Reports'', but was given its own category for the very simple reason that the journal had never done a Historical case study before and the article had exceeded the journal's required word length for all the other categories by almost double.

The review panel did find the medical theories and conclusions contained in the paper to be medically sound.  If the panel's decision had been any different, then the paper would not have been accepted for publication.

It *has* been found to be medically sound by peer-review.  It *has* been published in a recognised hematology journal.
 
Find any excuse you like to try and explain it away, but now that this new alternative hypothesis for Alexei's blood disease is a matter of public record in the National Library of Medicine.... you're still stuck with it. :-)

JK
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 24, 2006, 12:18:31 PM
Mr Kendrick,

Do you therefore believe that none of the members of the Royal family who were purported to have had haemophilia actually had haemophilia, then?  Is this rare blood disease you speak of an inherited condition? Because if not, how do you explain the occurence of bleeding diseases consistently throughout the royal family? They can't all have had random bleeding diseases with no inherited connection, surely?

Now I'm no scientist but you've got to admit, the chances of a boy born to a mother with known haemophilia in her family to have a rare blood disease very similar to haemophilia but a separate disease would have to be about a million to one, right?

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Ortino on April 24, 2006, 07:29:47 PM
Quote
Nice try, Belochka, but rest assured that this article was fully subject to peer- review, just as any other paper that is submitted to the journal must be.  The Journal's editor who had put this same paper to review is a professor of Hematology/Oncology at Emory University in Atlanta.

  Out of curiosity, who is this professor at Emory?

Quote
Do you therefore believe that none of the members of the Royal family who were purported to have had haemophilia actually had haemophilia, then?  Is this rare blood disease you speak of an inherited condition? Because if not, how do you explain the occurence of bleeding diseases consistently throughout the royal family? They can't all have had random bleeding diseases with no inherited connection, surely?

  I too am interested in hearing your explanation for this Mr. Kendrick.
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 24, 2006, 09:36:04 PM
Quote
Quote
Nice try, Belochka, but rest assured that this article was fully subject to peer- review, just as any other paper that is submitted to the journal must be.  The Journal's editor who had put this same paper to review is a professor of Hematology/Oncology at Emory University in Atlanta.

  Out of curiosity, who is this professor at Emory?

Quote
Do you therefore believe that none of the members of the Royal family who were purported to have had haemophilia actually had haemophilia, then?  Is this rare blood disease you speak of an inherited condition? Because if not, how do you explain the occurence of bleeding diseases consistently throughout the royal family? They can't all have had random bleeding diseases with no inherited connection, surely?

  I too am interested in hearing your explanation for this Mr. Kendrick.

The answers you seek are a matter of public record, far too lengthy to repeat here.  You should be able to find those answers in any good medical library, in the American Journal of Hematology, Volume 77, Number 1, September 2004.

JK
Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on April 24, 2006, 10:40:18 PM
My cousin Aldo Rodríguez was physician. Since he sadly died not too far away, I inherited all his medicine books. I have one of hematology. Did you want I search in it what it saids about hemophilia symptoms and thrombocitopenya's one? It will be hard to me to translate it (the books are all in Spanish), but I can try to do it.

As for hemophilia, I think there are some good sites in Internet depicting this awful sicknes (awful even today, when there is VIII Factor and other blood coatings) and its different manifestations.

RealAnastasia.
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 25, 2006, 01:03:37 AM
Quote

The review panel did find the medical theories and conclusions contained in the paper to be medically sound.  If the panel's decision had been any different, then the paper would not have been accepted for publication.

JK


Well I am amazed, perhaps you can clarify one point for me today?

@ p 95 of your "Historic Perspective" you claim that "...pupura: "a disease characterized by purple or livid spots inder the skin, due to internal bleeding from small blood vessels."

Curiously I was never knew that "purpura" is a disease.  :o

Can you clarify this a bit further for us?

Thank you
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 25, 2006, 07:36:08 AM
Quote
Quote
Quote
Nice try, Belochka, but rest assured that this article was fully subject to peer- review, just as any other paper that is submitted to the journal must be.  The Journal's editor who had put this same paper to review is a professor of Hematology/Oncology at Emory University in Atlanta.

  Out of curiosity, who is this professor at Emory?

Quote
Do you therefore believe that none of the members of the Royal family who were purported to have had haemophilia actually had haemophilia, then?  Is this rare blood disease you speak of an inherited condition? Because if not, how do you explain the occurence of bleeding diseases consistently throughout the royal family? They can't all have had random bleeding diseases with no inherited connection, surely?

  I too am interested in hearing your explanation for this Mr. Kendrick.

The answers you seek are a matter of public record, far too lengthy to repeat here.  You should be able to find those answers in any good medical library, in the American Journal of Hematology, Volume 77, Number 1, September 2004.

JK

I'm not asking for how the American Journal of Hematology explains it, I'm asking how YOU explain it.  

What is YOUR belief concerning the occurences of haemophilia in the royal family? Do YOU believe NONE of them suffered from haemophilia? What is YOUR explanation for the bleeding diseases? How did YOU come to this conclusion? What scientific evidence do you have to prove YOUR claims?

Don't skirt around the question by pointing to a resource you know full well hardly any of us would have access to. Answer the questions we have put to you, or be man enough to admit that there is no satisfactory explanation.  Your claims are built on circumstantial evidence, that when fitted into the 'big picture', does not add up at all. An uninherited bleeding disease almost identical to the symptoms of haemophilia but NOT haemophilia suffered by a boy whose grandmother and aunts were known carriers of haemophilia? That's got to be some coincidence, right? Some BIG, completely UNBELIEVABLE and UNCONVINCING coincidence.  Get your head out of the clouds, please!

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 26, 2006, 02:59:38 AM
Quote
Quote

The review panel did find the medical theories and conclusions contained in the paper to be medically sound.  If the panel's decision had been any different, then the paper would not have been accepted for publication.

JK


Well I am amazed, perhaps you can clarify one point for me today?

@ p 95 of your "Historic Perspective" you claim that "...pupura: "a disease characterized by purple or livid spots inder the skin, due to internal bleeding from small blood vessels."

Curiously I was never knew that "purpura" is a disease.  :o

Can you clarify this a bit further for us?

Thank you

Dear Belochka

The words that you quote are not, as you put it, my "claim".

If you read that paragraph again in its entirety, you will observe that the words you now question... "a disease characterised by purple or livid spots under the skin, due to internal bleeding from small blood vessels" ...are contained within quotation marks.  Follow the attached source note (9) and you will find that those same words that are contained within those quotation marks are, in fact, a quote that comes from the American edition of the Oxford Dictionary.

Long before we ever knew about the influence of X-linked genes and the blood Factors VIII and IX, the Director of Hematology at Michael Reese Hospital in Chicago , Dr. Raphael Isaacs, had written these words in "The Blood and Its Diseases" in 1948:

"Some patients bleed easily because their blood does not clot readily or because the clot is not strong and firm.  In hemophilia, the blood will sometimes remain fluid for hours after removal from the body... Purpura is also a condition in which there is abnormal bleeding, but this is due to the fact that the clot, which forms in the proper time, is not strong enough to hold back the flow of blood. Purpura may be a disease in itself or it may be a symptom of another disease."

Before you ask, yes, the bleeding of Purpura can be found as a symptom of an X-linked blood disease... but not the same X-linked blood disease that you want it to be.

Quote
I'm not asking for how the American Journal of Hematology explains it, I'm asking how YOU explain it.  

Dear Rachel

I apologise if the point of my last post was not sufficiently clear.  

I have already outlined the explanation that you seek... in the medical paper that I wrote... in the American Journal of Hematology.

We've already been down this very same road on this same discussion board at this same time last year.  I'm not at all eager to repeat that experience.  My observations on these questions are already a matter of public record, both here and elsewhere.

JK
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 26, 2006, 03:19:05 AM
You know, I never realised non medical professionals could write medical articles...

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 26, 2006, 04:44:17 AM
Quote
You know, I never realised non medical professionals could write medical articles...

Rachel
xx

Rachel some believe they can, and that is what is so amusing!  ;D
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 26, 2006, 05:58:47 AM
Quote
... in fact, a quote that comes from the American edition of the Oxford Dictionary.

Long before we ever knew about the influence of X-linked genes and the blood Factors VIII and IX, the Director of Hematology at Michael Reese Hospital in Chicago , Dr. Raphael Isaacs, had written these words in "The Blood and Its Diseases" in 1948:

"... Purpura may be a disease in itself or it may be a symptom of another disease."

JK

 Mr Kendrick,
 
My multi-volume publication of the Oxford Dictionary generously offers pages of definitions which commence with the year 893, through to the years that include 1225 and 1858 upto the present day, and further divided into disciplines. Over the centuries the definitions cited from the London edition of OED (Vol VIII Poy-Ry) @ p 1630 agree that:  

 

purpura = purple  

  
 Clearly you must agree that the Latin definition "purpura" or simply in English the color purple - cannot be a disease.  [/font]
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 26, 2006, 09:10:11 AM
RaRa:

Anyone can write anything they want to. Does putting it down on paper make it TRUE? One journal published a piece. Does THAT make it true? Does publishing the piece mean that the journal ACCEPTS the theory as accurate? Genuine peer-review says more than the "theory is medically sound", GENUINE peer-review TESTS the theory for accuracy against known medical science.  Just because the theory is OUT THERE doesn't mean its True. THESE are the nagging questions Mr. Kendrick tap-dances around.

Mr. Kendrick, a journalist and not a scientist has HAD his answer about his theory from the best experts on the subject, he just doesn't like answer he got. Here IS the answer from the scientific community, from Mr. Kendrick's own words:

[highlight]"Dr. Pavel Ivanov appeared to mistake me for a fellow scientist the first time that we spoke on the telephone.  He hasn't answered my letters now since September 1995.  The late Dr. William Maples at the University of Florida stopped talking the year before that.  England's Dr. Peter Gill sent photocopies of his 1994 NATURE GENETICS article without ever saying a word."[/highlight]

Res Ipsa Loquitor
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 26, 2006, 04:44:45 PM
You've just perfectly demonstrated all of the reasons why I am not at all eager to repeat the previous experience of our earlier discussions on the subject of this thread... both here on the AP Board and before that on the news group alt.talk. royalty.

You all delight in taking my previous writings totally out of context to support your own position.  The latest quote you have chosen, written over ten years ago, was *NOT* written in reference to the medical questions that are being discussed in this thread.  It was only written in reference to a set of  mtDNA results that are *still* being withheld by the Russian Academy of Sciences and the British Forensic Science Service.  The three men who are named therein... Dr. Gill.. a forensic scientist.. Dr. Ivanov.. a molecular biologist.. and the late Dr. Maples.. a forensic pathologist.. are *NOT* haematologists.  Their silence is related only to their refusal to publish that certain set of mtDNA results that has been withheld for the past 13 years.  Their silence is *NOT* directed at the blood disease question being discussed here in this thread.

As to the question of medical and non-medical professionals writing on this subject ...

The number of non-medical professionals who write here on this board in support of heamophilia... without any proven medical *laboratory* evidence to support their claim.. massively outweighs the number of those on the other side of the fence who have dared to suggest that there are several other medically valid possibilities that could explain Alexei's disease.

The first to have claimed in 1927 that Nicholas's four short diary entries about umbilical bleeding in 1904 was evidence of haemophilia... Catherine Radziwill... was *not* a medical doctor.  Pierre Gilliard, writing in 1921 about an event that happened in 1912, was a French teacher.  He was *not* a medical doctor.   Gen. Spiridovich, writing in 1928... ten years after the murders.. was *not* a medical doctor.  He was a professional soldier.   Robert Massie, rewriting their words forty years later in 1967 as if they were his own, is *not* a medical doctor.

The Imperial surgeon Dr. Sergei Federov had *never* actually written that Alexei's disease was heamophilia.  Dr. Evgeny Botkin, who had died at Nicholas II's side, had *never* actually written that Alexei's disease was heamophilia.  The Imperial paediatrician, Dr C.A. Raukhfus, had *never* actually written that Alexei's disease was heamophilia.  Dr. Vladimir Derevenko, whose own son Kolia was Alexei's best friend, had *never* actually written that Alexei's disease was heamophilia.  Alexei's own parents, who certainly should have known the diagnosis, are known *never* to have said even once that their son's disease was haemophilia.

There is *no* actual first hand evidence.  There is *no* physical laboratory evidence.  It is merely nothing more than an unchallenged piece of classic Royal gossip, repeated over and over again by second and third hand sources whose claims have never been questioned..... until now.

Just because a story has never been challenged... does not make it true.   Just because a story has been repeated thousands of times in hundreds of books... does not make it true.   The stories of other historical characters like King Arthur and Robin Hood have also been repeated thousands of times in hundreds of books.   It doesn't make those stories true, either.

Fourteen years ago, Dr. Mark Kulikowski, a History Professor at Oswego College at the State University of New York, wrote the following words in the conclusion of his 1992 dissertation titled "Rethinking the Origins of the Rasputin Legend":

"The world of scholarship has no room for fantasy.  And yet, despite its largely sensational, unsubstantiated, and rumor-filled origins, the legend lives on in contemporary scholarship.  A major reason for this has been the failure of scholars to question the legend's roots.  Virtually all serious research on Rasputin since 1917 has considered the legend true, and has sought to fit the facts to it.  This has led, at best, to very minor adjustments and to the idea that there is nothing new to say, which unfortunately means that writing on Rasputin has been left largely to popular authors who simply retell the old story.   Still unaswered are some fundamental questions not only about Rasputin, but about our understanding of the end of the monarchy in Russia.  Given the recent call to rethink major questions of Russian history, perhaps we can no longer afford to accept Rasputin as he appears to be."

Clearly, no one was listening back when Professor Kulikowski first spoke those words in 1992. Fourteen years later, nothing has changed.

JK
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 26, 2006, 09:27:28 PM
Quote
Quote
... in fact, a quote that comes from the American edition of the Oxford Dictionary.

Long before we ever knew about the influence of X-linked genes and the blood Factors VIII and IX, the Director of Hematology at Michael Reese Hospital in Chicago , Dr. Raphael Isaacs, had written these words in "The Blood and Its Diseases" in 1948:

"... Purpura may be a disease in itself or it may be a symptom of another disease."

JK

 Mr Kendrick,
 
My multi-volume publication of the Oxford Dictionary generously offers pages of definitions which commence with the year 893, through to the years that include 1225 and 1858 upto the present day, and further divided into disciplines. Over the centuries the definitions cited from the London edition of OED (Vol VIII Poy-Ry) @ p 1630 agree that:  

 

purpura = purple  

  
 Clearly you must agree that the Latin definition "purpura" or simply in English the color purple - cannot be a disease.  [/font]


Mr Kendrick it seems by your silence that you are unable to rebut this obvious error in your published "Historic Review".

This single example (there are many others) would have been scrutinized and would have been brought to your attention to rectify.

The error which I have highlighted above confirms that your article WAS never peer reviewed according to customary rigorous standards which medical researchers must meet.

Allow me to repeat myself:

Historic appraisals do not ADVANCE medical science . If anything your implausable twists and turns do little to enhance your journalistic reputation.

You are disrespectful to the Romanov Family and lack respect to the eternal memory of Tsesarevich Alexei who died a horrendous death in July 1918
.
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 26, 2006, 09:41:25 PM
Quote
Fourteen years ago, Dr. Mark Kulikowski, a History Professor at Oswego College at the State University of New York, wrote the following words in the conclusion of his 1992 dissertation titled "Rethinking the Origins of the Rasputin Legend":

"The world of scholarship has no room for fantasy."  

Clearly, no one was listening back when Professor Kulikowski first spoke those words in 1992. Fourteen years later, nothing has changed.

JK

Wise words indeed -  it seems that you Mr Kendrick have failed to listen to Professor Kulikowski.   ::)
Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on April 27, 2006, 12:16:32 AM
I'm not a doctor either, but I found an interesting link (among others) about haemophilia where you have a good explanation of its symptoms (who are the same than Alexei had):

www.hemophilia.org  

I think its an accurate site, for it included other bleeding disorders depiction in it, and makes an excellent account about different kind of hemophilias. This is: hemophilia A(classical one) , Christmas Disease , Von Willebrand and, inside Hemophilia A, the ones who are less or more severe.

I explain it very bad, for my English is not so high to discusse scientific issues...It's better to go to the site and see.

RealAnastasia.

P.S: I have some good infos about hemphilia, since I live a block away of "Fundaleu" an Hematology Insitute that, at the same time is a hospital for patient suffering blood diseases(most of them are hemophiliacs). I have brochures too, but they are in Spanish, so they should not help.
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 27, 2006, 02:15:36 AM
Quote
Quote
Fourteen years ago, Dr. Mark Kulikowski, a History Professor at Oswego College at the State University of New York, wrote the following words in the conclusion of his 1992 dissertation titled "Rethinking the Origins of the Rasputin Legend":

"The world of scholarship has no room for fantasy."  

Clearly, no one was listening back when Professor Kulikowski first spoke those words in 1992. Fourteen years later, nothing has changed.

JK

Wise words indeed -  it seems that you Mr Kendrick have failed to listen to Professor Kulikowski.   ::)

Oh, Dear Belochka...

You're far too predictable!

Again, you take words out of context to support your opposition, just as I had expected you would. ;-)

... conveniently ignoring, of course, the sentences that followed immediately after the quote you have singled out...

"And yet, despite its largely sensational, unsubstantiated, and rumor-filled origins, the legend lives on in contemporary scholarship.  A major reason for this has been the failure of scholars to question the legend's roots.  Virtually all serious research on Rasputin since 1917 has considered the legend true, and has sought to fit the facts to it."

Just try twisting this one to suit your arguement, if you can.

...also from History Professor Kulikowski's 1992 dissertation...

"Like many legends, Rasputin's contains elements that border on the fantastic -- his mystical powers, unlimited political influence, and near invincibility at the hands of his assassins. While perhaps acceptable when ascribed to historical figures of antiquity, these elements should strike a jarring note for modern audiences. Yet it is clear they do not.  Undoubtedly, the constant repetition of the legend has led audiences simply to accept it as true.  Yet simple repetition does not make for historical truth."

Just for a change...

Why don't you actually try finding some good solid medical *laboratory* evidence that will support your opposition... instead of just taking the easy way out, as you always do, by simply attacking those few who would dare to propose an alternative interpretation of the evidence?
 
JK
Title: Re: Alexei and Hemophilia
Post by: Ra-Ra-Rasputin on April 27, 2006, 03:14:43 AM
Oh, Mr Kendrick, how very wrong you are. :)

Alexei had haemophilia; there is plenty of evidence to support this claim.  

The only people who question the diagnosis are people like YOU, who are supporting the claims of an Alexei impostor, who has zero resemblance to Alexei and spent his life trading on Alexei's memory.  And you want people to take you seriously??

I think it is absolutely DISGUSTING that you are trying to prove that Alexei did not have haemophilia to bolster the claims of a man shamelessly using the identity of a horrifically murdered little boy.  Alexei deserves to rest in peace, not have his memory abused by people like you.  It is vile and it is just plain WRONG to take on the identity of someone who has been killed and to use that identity to advance yourself.  

You are not a medical professional.  Your own website is littered with so many factual errors that it is laughable that anyone would take you seriously.

Once again, how do you explain the hereditary bleeding disease in the Royal family? Did no one have haemophilia? Or did Alexei just happen to be REALLY unlucky and just happen to get a bleeding disease different from haemophilia when haemophilia was already in the family? That's got to be...what....a billion to one?

Stop spewing this complete and utter nonsense and have some respect for the dead who are no longer here to defend themselves.

Rachel
xx
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 27, 2006, 05:30:34 AM
Quote
Quote
Quote
Fourteen years ago, Dr. Mark Kulikowski, a History Professor at Oswego College at the State University of New York, wrote the following words in the conclusion of his 1992 dissertation titled "Rethinking the Origins of the Rasputin Legend":

"The world of scholarship has no room for fantasy."  

Clearly, no one was listening back when Professor Kulikowski first spoke those words in 1992. Fourteen years later, nothing has changed.

JK

Wise words indeed -  it seems that you Mr Kendrick have failed to listen to Professor Kulikowski.   ::)

Oh, Dear Belochka...

You're far too predictable!

Again, you take words out of context to support your opposition, just as I had expected you would. ;-)

JK

 If my predictability amuses you then I am comforted to know that I am consistent.  

Let me leave you with this thought:
   Truth is not tainted by the interpretation of others.  :)
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 27, 2006, 10:21:45 AM
Kendrick dismisses Spiridovitch's account since Spirid. was not "a doctor". Well, let's look at what he wrote:

"He jumped and fell onto the side of the bathtub.  It hurt him, but without doubt the pain was not very great because he did not say anything afterward.  However, only a few minutes later, he lost conscience and they carried his nearly inanimate body to his bed.
      This accident in a healthy boy would not have had any unfortunate results, but it was for him, who suffered from hemophilia, the start of many severe complications that could never be totally healed.  He was bleeding severely internally.  As always, the illness was assiduously hidden to the entourage.  They did not feel it necessary to call in a specialist doctor.  They put him totally under the care of the family doctor, Botkin.  It was the Empress herself who directed his treatment. " and:

" Botkin never left him for a moment, but did not know what he could do to bring him relief. His pain grew so bad that the sick child would not permit the swelling to be touched.  He slept on his side, leg folded, pale, thin and never stopped moaning.
      They called the surgeon Serge Petrovitch Fyedorov from Petersburg, and the old Rauchfuss.  They arrived on October 4th, the night before Alexis Nicholaiovitch's Name's day. The illness got worse.  October 6th, his temperature rose to over 39 degrees (102 F.) and would not go down.  After a consultation, the doctors declared that that the situation was desperate.  Fyedorov said that he had decided not to open the swelling, given that they would be operating on the inheritor of the throne, and the operation would bring on fatal bleeding.  Only a miracle could save the child's life, he said.  And when they asked him what that miracle might be, he responded by shrugging his shoulders and said that the swelling might spontaneously be reabsorbed, but that the chance of that actually happening was only less than one in a hundred."


Now, Spiridovitch was quite literally WITH the IF at Spala and Bielovezh 24/7. We KNOW he spoke directly with the Emperor and Empress. We KNOW he spoke directly to the doctors, so WHERE did this "non-doctor" even HEAR the word "hemophilia"?  Fyedorov may not have said the exact word "hemophilia" but his FIRST HAND statement is : [highlight]the operation would bring on fatal bleeding.[/highlight]  Without question, Spiridovitch recieved first hand information from the doctors as is self evident from the text. So, just because HE was not a doctor does not throw his statements out as unreliable information.  He didn't make this stuff up out of whole cloth did he? Nope, as a policeman by training, he was reporting the facts the recieved first hand.


Is it just "mere coincidence" that only two weeks later, the London Journal "Hospital" and the New York Times BOTH publish the diagnosis of "hemophilia" of the Tsarevich by "his doctors"??

or, did they just make that up too? like Spiridovitch did.... 8-)
Title: Re: Alexei and Hemophilia
Post by: imperial angel on April 27, 2006, 12:10:06 PM
Let's get a lock for this; Alexei obviously had hemophilia, and that's that. It makes no sense otherwise. I think this thread is a farce of true Alexei discussion, although thanks to everyone who has posted the evidence and opinion that Alexei had hemophilia. That's the truth.
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 27, 2006, 12:52:00 PM
Quote
Kendrick dismisses Spiridovitch's account since Spirid. was not "a doctor". Well, let's look at what he wrote:

"He jumped and fell onto the side of the bathtub.  It hurt him, but without doubt the pain was not very great because he did not say anything afterward.  However, only a few minutes later, he lost conscience and they carried his nearly inanimate body to his bed.

I've already dealt with this one at length on this discussion group before, at this same time last year.  The fact that this website has since been restructured, preventing its members from easily accessing its archives to look up my answer, is not my doing.

All I will say is this: Research the causes and symptoms of Subcapsular Splenic Haemorrhage. Find out what it is, what can cause it, why it can be potentially fatal, why it can cause a dangerously high fever lasting eight to ten days, why young children can spontaneously recover from it, why it can leave its survivors with a serious recurring haemolytic disorder... and, most importantly of all, why it is not haemophilia.

My answer to the FA's posting can be found in the archives of this discussion group.  I do not intend to repeat myself.  

JK
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 27, 2006, 03:14:45 PM
Which of course and typical for Kendrick, who plays fast and loose with facts to suit his theory, omits ALL THE OTHER bleeding episodes in Alexei's life, all caused by bumps and bruises....No point in Kendrick repeating his responses, since they are not valid explanations of "why" Alexei did not have haemophilia...

Title: Re: Alexei and Hemophilia
Post by: Belochka on April 27, 2006, 09:40:37 PM
Quote
Which of course and typical for Kendrick, who plays fast and loose with facts to suit his theory, omits ALL THE OTHER bleeding episodes in Alexei's life, all caused by bumps and bruises....No point in Kendrick repeating his responses, since they are not valid explanations of "why" Alexei did not have haemophilia...


No matter how much wool Mr Kendrick prefers to toss over our eyes - a few of us are in the informed position to discard the detritus efficiently.

Mr Kendrick has failed to re-address "purple disease".


Quote

The error which I have highlighted above confirms that your article WAS never peer reviewed according to customary rigorous standards which medical researchers must meet.


You are disrespectful to the Romanov Family and lack respect to the eternal memory of Tsesarevich Alexei who died a horrendous death in July 1918[/font].  


Mr Kendrick to conclude my contact, please re-appraise yourself with our paper, published in two parts: "An Inheritance No one Desired" that was kindly published by European Royal History J. vol. 8, October and December, 2005. If you do not have copies you may also read it here:



http://www.geocities.com/mushkah/Hemophilia.html


Now I shall bow out of this thread because there is no more to be said.



Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 27, 2006, 09:55:37 PM
Quote
Quote
Quote
... in fact, a quote that comes from the American edition of the Oxford Dictionary.

Long before we ever knew about the influence of X-linked genes and the blood Factors VIII and IX, the Director of Hematology at Michael Reese Hospital in Chicago , Dr. Raphael Isaacs, had written these words in "The Blood and Its Diseases" in 1948:

"... Purpura may be a disease in itself or it may be a symptom of another disease."

JK

Mr Kendrick,
 
My multi-volume publication of the Oxford Dictionary generously offers pages of definitions which commence with the year 893, through to the years that include 1225 and 1858 upto the present day, and further divided into disciplines. Over the centuries the definitions cited from the London edition of OED (Vol VIII Poy-Ry) @ p 1630 agree that:  
 

purpura = purple  

  
 Clearly you must agree that the Latin definition "purpura" or simply in English the color purple - cannot be a disease.  [/font]


Mr Kendrick it seems by your silence that you are unable to rebut this obvious error in your published "Historic Review".

This single example (there are many others) would have been scrutinized and would have been brought to your attention to rectify.

The error which I have highlighted above confirms that your article WAS never peer reviewed according to customary rigorous standards which medical researchers must meet.

Allow me to repeat myself:

Historic appraisals do not ADVANCE medical science . If anything your implausable twists and turns do little to enhance your journalistic reputation.


Deal with this... If you can.

In order to answer Belochka's concern about the question of peer review, I have written the Editorial manager of the American Journal of Hematology to answer your concerns.

This is my letter to the AJH...


Patricia Krause,
Editorial Manager,
American Journal of Hematology

Dear Patricia

I'm having a bit of trouble dealing with certain opponents to my paper "Was
Rasputin Not the Healer of Legend?".  They now contend that a paper which is
published under the category of "Historical Perspective" would not have been
subject to the process of peer review as all other papers appearing in the
journal would be.

Can you please confirm for me whether or not the medical paper that appears
under the heading "Historical Perspective" on pages 92-102 of Volume 77,
Number 1 of the American Journal of Hematology, September 2004, was put to a peer review before its publication?

My most grateful thanks for your very kind assistance.

Best Regards
John Kendrick

And this is the Journal's reply....

Dear Mr Kendrick:
 
The paper was reviewed, including several Associate Editors and the Editor.  

I hope you find this helpful.  Please don't hesitate to contact me with any further concerns or questions.

Best wishes,
Patricia Krause, Editorial Manager
AMERICAN JOURNAL OF HEMATOLOGY

The names on this list are the people who *did* put my paper to peer-review... and they are the ones who approved it for publication.
Please See:
http://ca.wiley.com/WileyCDA/WileyTitle/productCd-AJH,descCd-editorialBoard.html

If you still have a problem with this, then I suggest that you take it up with the Editor, Associate Editors, and Editorial Board members of the American Journal of Hematology whose names appear on this list.   They all have a great deal more knowledge and understanding about the science of heamatology than anyone who posts to this board.

So, there you have it, Belochka...
In spite of your very loudest protestations....

The September 2004 American Journal of Hematology paper titled "Historical Perspective: Russia's Imperial Blood: Was Rasputin Not the Healer of Legend"
*WAS* peer-reviewed and approved for publication by a panel of editors who are *all* leading experts in the medical science of Haematology.

Now, let that be an end to it!

JK
Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 28, 2006, 09:43:44 AM
AHH, but again, Mr. Kendrick, the $64,000 Question:

Do those who "reviewed" the piece CONCUR with the conclusions and find them to be ACCURATE?

There is a HUGE difference between "acceptable" for publication and "ACCEPTED as accurate"...NO?

Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 28, 2006, 09:40:55 PM
Quote
AHH, but again, Mr. Kendrick, the $64,000 Question:

Do those who "reviewed" the piece CONCUR with the conclusions and find them to be ACCURATE?

There is a HUGE difference between "acceptable" for publication and "ACCEPTED as accurate"...NO?


AHH, but again, Mr. Atchison...

The conclusion approved by the American Journal of Hematology's peer-review is the very same thing that I've been saying here for a long time...

"The only way to be certain of the Tsarevich Alexei's true diagnosis is to find and properly identify his missing remains and to then test samples from both his remains and the discovered remains of the Empress Alexandra for evidence of a suspected genetic disorder."
(AJH, Vol 77, No 1. Sept 2004, pg. 101)

What kind of challenge could there possibly be to the accuracy of that statement?

I'm sure you'll try challenging this other conclusion though, which the peer-review has also approved:

"Symptoms of delirum, high fevers, and heart problems, described in the writings of both Nicholas II and the tutor Pierre Gilliard, can be said to be inconsistent with that historically popular, but still unproven, diagnosis." (AJH, Vol 77, No 1. Sept 2004, pg. 97)

JK
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 28, 2006, 09:58:02 PM
Quote
AHH, but again, Mr. Kendrick, the $64,000 Question:

Do those who "reviewed" the piece CONCUR with the conclusions and find them to be ACCURATE?

There is a HUGE difference between "acceptable" for publication and "ACCEPTED as accurate"...NO?


I fully concur with FA,

I had to return to address this matter as a published professional in the field.

Articles can be submitted to medical journals, and depending which category it would embrace e.g. Letters to the Editor, a genuine laboratory research article or a mere "historic perspective", EACH will require a different standard of peer review.

Medical scientists are subjected and must conform to rigorous standards, where as other items that may be published will receive less attention. Primarily if a "historic perspective" is submitted then so long as the essence discusses something of a hematologic nature, it shall suffice.

Clearly in this case the review was only cursory - because if the contents were scrutiized to the same exacting standard, then that personal "perpective" would never have been accepted. Too many medical errors occur within that specific publication. Equally it would have been outside the review board to srutinize the veracity of cited extracts from Russian memoirs.  

The fact that this jounalistic compilation introduces the pathetic notion of an imposter falls outside sound academic reasoning. To the discredit of the Journal on this occassion, it failed to exercise its authority. It has made an gross error of judgement. Regretfully such incidents do occur, but we as informed profesionals do know what should be set aside as a curiosity of the lowest level.
Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 28, 2006, 11:01:59 PM
Quote

The fact that this jounalistic compilation introduces the pathetic notion of an imposter falls outside sound academic reasoning. To the discredit of the Journal on this occassion, it failed to exercise its authority. It has made an gross error of judgement. Regretfully such incidents do occur, but we as informed profesionals do know what should be set aside as a curiosity of the lowest level.[/font][/color]

With respect, Belochka

The paper approved by the American Journal of Hematology's peer-review makes no mention at all of any claimant.  

Are you prepared to confront the Journal's editors directly -- all of them experts in haematology -- with the accusation that you have just made against them?
Title: Re: Alexei and Hemophilia
Post by: Belochka on April 28, 2006, 11:47:06 PM
Quote
Quote

The fact that this jounalistic compilation introduces the pathetic notion of an imposter falls outside sound academic reasoning. ...

With respect, Belochka

The paper approved by the American Journal of Hematology's peer-review makes no mention at all of any claimant.  

With respect, I never used the word "claimant" Mr Kendrick.

May I direct you to an excellent  "Historic" account of Hemophilia published in the British Journal of Hematology:

Historic Review: The History of Haemophilia in the Royal Families of Europe. BJH, 1999, 105, 25-32

This well researched account was written by Dr Richard F. Stevens, a pediatric Hematologist at Royal Manchester Children's Hospital, Manchester, England.


Title: Re: Alexei and Hemophilia
Post by: Forum Admin on April 29, 2006, 09:33:10 AM
Mr. Kendrick.

First, FA is Mr. MOSHEIN. Bob Atchison posts ONLY as Bob Atchison here.

Second, nothing can be MORE specious and self-serving than to quote your OWN words and ascribe them to be the belief of OTHERS. PLEASE do contact those who reviewed your work and ask them SPECIFICALLY if they believe in the accuracy and veracity and correctness of your assertions in your paper.  I welcome their response. OR, do provide me with the email addresses of those involved and I will gladly ask them myself and publish their response here, in the AYE or NAY.

Title: Re: Alexei and Hemophilia
Post by: J_Kendrick on April 29, 2006, 09:54:50 PM
Oh, Hello again, Rob.  Sorry for the mix up.  Please say Hi! to Bob for me :-)

Again you've deliberately twisted what I've said in order to avoid my question, just as you always do.  I had merely responded to your previous posting by answering that the following statement was the conclusion of my paper that had been passed by peer-review:

"The only way to be certain of the Tsarevich Alexei's true diagnosis is to find and properly identify his missing remains and to then test samples from both his remains and the discovered remains of the Empress Alexandra for evidence of a suspected genetic disorder."

And then I asked you: What kind of challenge could there possibly be to the accuracy of that conclusion? ... a question that you obviously have no intention of answering.   I did *not* suggest for even a single moment, as you now claim, that those words might be the thoughts or beliefs of others.  Nor would I ever do such a thing.

Seven years ago, paediatric haematologist Dr. Richard Stevens had come awkwardly close to saying much the same thing about testing for genetic markers in his paper in the British Medical Journal, but in a much more convoluted fashion.  In his "Historical Review" (BMJ, 1999, 105, 25-32), Dr. Stevens had written these words:

"Our understanding of the genetics of haemophilia has increased dramatically over the past few years and the Intron 22 inversion can be used in tracking pedigrees in up to half of families exhibiting severe Haemophilia A. Polymorphisms in Introns 13 and 22 of the Factor VIII gene can be identified using blood spots stored on filter paper.  However, nuclear DNA is much more unstable than mtDNA and liable to degradation.  In the case of mitochondrial DNA, successful analysis has been performed on tissue samples on mammoths and Neanderthal Man going back over 30,000 years.  For nuclear DNA, the present limit appears to be 100 years using PCR technology.  We can only speculate as to the exact genetic marker associated with the Tsarevich's haemophilia and his carrier mother and sisters (whoever might have been affected).

(.... Yes, Belochka, I have read it!.... :-) )

If only Dr. Stevens had taken that same thought one step further.  If only Dr. Stevens had also pointed out that the Empress Alexandra's DNA... and the DNA of three of her four daughters... have been available to attempt those tests for the suspected genetic marker ever since their bones were first uncovered in 1991.

All someone has to do is test those bones for the suspected genetic marker and then we'll know which genetic marker it is.  Then we'll know whether it was Haemophilia A or B.  Then we will know if it was even haemophilia at all.  If there is no genetic marker for haemophilia, then it wasn't haemophilia.  Then it had to be something else.....  

But... If the testers actually do fail to find that genetic marker in Alexandra's DNA , then you can bet your bottom dollar that they'll either say that the test was inconclusive... or they simply won't bother to release the test results at all.

Disappointingly, Dr. Steven's 1999 BMJ "Historical Review" is just another rehash of all the same things that we've all been told in history class.  In spite of his having been a paediatric haematologist, Dr. Stevens had made no attempt at all to itemise all of Alexei's symptoms in detail and demonstrate why he believed that the historically popular diagnosis is correct.  He had simply done the very same thing that everyone else has done... taking the popular diagnosis for granted, without ever once daring to do an in-depth analysis of the evidence to confirm that diagnosis.  

All that Dr Stevens had done in that 1999 BMJ article was to take the same safe road and repeat all of the same old stories.  He did not give any source notes to show where he had obtained the historical details that he used to write the article.  He gave just a handful of references.. all the familiar names... for his rehash of the recent DNA investigation... and just four Items for "Recommended reading", one of which is actually a British TV mini-series.  

Given his experience as a paediatric haematologist, I would very much like to have met with Dr. Stevens to compare notes and discuss both of our published papers at length.  Sadly, however, that won't ever be possible.

The author of that same BMJ article that Belochka now wants us to read had suddenly vanished without a trace three summers ago, leaving his jacket and briefcase behind in his office and his Audi in the car park.  The last time that Dr. Stevens was seen alive was on a hospital security camera at 7:10 in the morning of July 21, 2003.  His wife made numerous appearances in the British media throughout the following weeks, pleading for help to find him.  Six months later, Dr. Stevens's body was found by hikers in a disused slate mine, more than 75 miles away from his home in Manchester.  Two days before Christmas 2004, seventeen months after he first disappeared, a handful of letters that Dr. Stevens had written to his mistress were discovered in an abandoned mountain hut in Britain's Lake District in Cumbria.

Oh.. and Rob... about your speaking to the editors of the American Journal of Hematology (whose names I've already listed here). Will you still post their words on this board -- *unedited* -- if their comments to you about my paper turn out to be positive?

Somehow, I very much doubt that you will.

JK
Title: Re: Alexei and Hemophilia
Post by: Katja74 on July 08, 2006, 04:37:37 AM
I know that the tsar and tsarita made a secret out of Alexeis hemophilia and did not tell the public about his true illness, even after the Spala crisis. But now I ve read a book by a Russian author who make a note about the fact, that people at Russia got to know Alexeis illness in 1914.
I can imagine that it was a big deal to tell the public that the heir to the throne was a hemophiliac before the WW I, because it was an illness of which most boys died during those days. Can you help me?
And is it true that Alix lost a baby before Alexeis birth, a baby son in 1902? Erickson says she just thought that she was pregnant again and others say she had lost the baby.

Thanks!
Title: Re: Alexei and Hemophilia
Post by: Laura Mabee on July 08, 2006, 09:35:31 AM
During 1902, Alix (in my opinion) was influenced by M. Philippe. Philippe was trying to influence Alix to have a son with his mystics.
When this phantom pregnancy took place, there was no gender to it, as there was no pregnancy.

Here are some excerpts from A Lifelong Passion.
-------

Xenia to Aprak [August 19th, 1902]
[Dowager Empress Marie's Papa]
Dear Aprak,
We have all felt so terribly disappointed since yesterday. Can you imagine anything so awful, it seems poor A.F. [Alix] isn[ch8217]t pregnant after all [ch8211] for 9 months she had nothing, then suddenly it came, but completely normally, without pain. The day before yesterday, Ott [Doctor] saw her for the first time and confirmed that there was no pregnancy, but that luckily everything internally was all right. He says that such cases do happen, and are caused by anaemia. It[ch8217]s so awful, we can[ch8217]t think of anything else, how terrible for them, painful and sad. All that long, tiresome waiting has ended in nothing[ch8230]

KR [ch8211] Diary [August 20th]
[Grand Duke Konstantin Romanov [ch8211] Nicky[ch8217]s cousin]
I don[ch8217]t remember if I already noted this in the diary, but from the 8 August we have been waiting every day for a confirmation of the Empress[ch8217]s pregnancy. Now we have suddenly learnt that she is not pregnant, indeed that there never was any pregnancy, and that the symptoms that led one to suppose it were in fact only anaemia! [ch8230] Alix cried a lot when doctors Ott and Girsh, who were at last admitted to see her, determined that not only was there no pregnancy, but there never had been.

Xenia to Aprak [August 20th]
In a few words my dear Aprak, in addition to yesterday. This morning A. F. [Alix] had a minor miscarriage [ch8211] if it could be called a miscarriage at all! [ch8211] that is to say a tiny ovule came out! Yesterday evening she had pains, and at night too, by morning it was all over when this event happened! Now at least it will be possible to make an announcement and tomorrow a bulletin will be published in the papers [ch8211] with information about what happened. At last a natural way out of this unfortunate situation has been found[ch8230]

KR [ch8211] Diary [August 22nd]
[ch8230] Yesterday the following bulletin appeared in the newspapers, signed by the royal accoucheur Professor Ott and the royal surgeon Girsh. [ch8216]A few months ago, the state of Her Imperial Majesty the Empress Alexandra Feodorovna underwent changes, which pointed to a pregnancy. At the present time, thanks to the departure from the normal course, the interrupted pregnancy has resulted in a miscarriage, which occurred without any danger, the temperature and pulse remaining normal. Peterhof, 20 August 1902[ch8217]

-----
Needless to say, there was no pregnancy, but for the sake of the public they made it seem that there was. I believe it[ch8217]s even a higher stretch to say that this phantom pregnancy was a boy.
Title: Re: Alexei and Hemophilia
Post by: Mie on July 08, 2006, 11:29:59 AM
What I know about this pregnancy is this:

Mr. Philippe was introduced to the IF by their relatives wifes from Montenegro (sorry for spelling! And I do not remember their names or titles  :( )
(They -I believe- introuced Rasputin too to them and they were very fascinated by *magicaly* things...  and wanted to help Alix for having a boy...)
Well Rasputin was a cheater and so was Mr. Philippe... he did some *odd* things(nothing sickening -but things what were not anything to do with a real medicine) to Alix and he insisted that no doctor was allowed to *help* Alix... (I hope this what I´m writing makes sence...)
And soon Mr. Philippe said that she´ll have a boy and is pregnant -they wanted believe he and no doctor were able to  check the situation out couse Mr. Philippe did not allowed it.

Well... six months passed by and all really believed she was pregnant! Even foreign land´s magasines informed that in Russia´s IF is about to be a child... But then I believe Alix´s menses starded and then finally doc. checked her out and took a note she never were pregnant.... :(

I do not remember did the puplic in some point know about the illnes(I do not believe so) but I think withing time they knew Aleksey was not healthy: that brought up many questions and gosspis about that the tsarevitch was an invalid --> was he able to be even an emperor.... but so many gossips were born before the revolution and their job was to blame the tsar etc..

ps. Laura thanks for your post. It was really interesting :)
Title: Re: Alexei and Hemophilia
Post by: Laura Mabee on July 08, 2006, 12:39:03 PM
Quote
Mr. Philippe was introduced to the IF by their relatives wifes from Montenegro
Indeed, it was the King of Montenegro's two daughters (Grand Duchess Militsa and Grand Duchess Stana) who introduced M.Philippe (and later Rasputin) to Alix and Nicky. These two sisters were known as 'the black peril', because of thier interest in the occult.. M.Philippe was a frenchman from Lyons, he was known to have a cure for nervous diseases through hypnosis. He died in 1905 however.  Alix and Nicky would meet M.Philippe at Znamenka, which was the resdence of Grand Duchess Militsa and her husband.

To point out how off the mark these sisters could be here is a tidbit:

Felix Yusupov, Memiors
One day as my father was walking by the seaside in the Crimea, he met the Grand Duchess Militsa driving with a stranger. My father bowed, but she did not respond. Meeting her by chance a few days later, he asked her why she had cut him. "You could not have seen me," said the Grand Duchess "for I was with doctor Philippe, and when he wears a hat he is invisible and so are those who are with him."

Also, in A Lifelong Passions there is this interesting tidbit -

A year before Philippe had worked upon the imagination of the Empress that she and all around her were convinced that she was with child [ch8211] until the illusion was exposed by the Empress[ch8217]s doctors.
Philippe explained what had occurred by her lack of faith and falling into a trance prophesised anew that the wish of the Empress to have a son would be gratified if she asked for the protection of St Serafim of Sarov. The saint was unknown in the Orthodox calendar [ch8230]. The Emporer ordered the Holy Synod to canonize Sarafim without delay. Pobedonostsev, The Head of the Synod, tried to explain that a man could not be proclaimed a saint by Imperial order, but he was told by the Empress Alexandra herself: [ch8220]The Emperor can do anything.[ch8221] Serafim was canonized at Sarov with great pomp in the presence of Nicholas and Alexandra. By the order of Philippe, the Empress bathed at the dead of night in the spring, which was said to have been blessed by the saint. The promised miracle had been preformed. [From V. Poliakov[ch8217]s biography of Empress Marie]


Quote
ps. Laura thanks for your post. It was really interesting :)
Anytime.  :)

Title: Re: Alexei and Hemophilia
Post by: Bob_the_builder on May 18, 2007, 06:55:30 PM
I imagine most hemophiliacs don't WANT to make children, in fear of passing on the disease. But most of them don't live past 30, atleast back in the earlier part of the twentith century.
Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on June 27, 2007, 11:12:27 PM
Well...Not necessarily. There are different grades of hemophilia, and the milder types of it allowed you to live beyond 30's or so. We have some examples of European Royals who lived beyond this age.

Oh...and for instance, we have an hemophiliac heroe, here in Argentina. He was born in the XVIII Century and was death at first of the XIX one. It was our warrior of Independence Don Martin Miguel de Güemes. He was an hemophiliac (he suffered from important bleedings and had had hemarthrosis..You must know that the difference between other bleeding desorders and hemophilia is precissely hemarthrosis), however he was an independence warrior. He was even a soldier! He died at 36. And why? His enemies would knew about his bleeding disease, and payed some men to shoot him by behing. A single bullet reached a very important artery in his back and he bleed until he dead. Since he was little this man suffered from internal bleedings (yes.. his disease was found when a sister he loved a lot, find him bleeding by the navel), but it didn't avoid him to be a soldier (he was General) in the Independence war.

RealAnastasia.

 
Title: Re: Alexei and Hemophilia
Post by: dmitri on July 05, 2007, 01:17:19 PM
No descendants currently have the disease.
Title: Re: Alexei and Hemophilia
Post by: Karlie on July 20, 2007, 11:06:26 AM
I have a few questions about hemophilia. I’ve tried to do research and all I got was a bunch of medical babble, maybe you could help?

If Alexei fell, how long would it take for his hemophilia to kick in?

Would it always act up?

And could there be any variation on the degree of pain? (like if he bruised his knee one day and it got really bad and then latter it got the same sized burse would the attack only be slight?) 
Title: Re: Alexei and Hemophilia
Post by: CorisCapnSkip on September 02, 2007, 06:28:55 PM
I'm not trying to be rude or annoying to anyone, but if Alexei's hemophilia was only episodic as you say, then wouldn't that in itself suggest that it could've been something else he had?  If it was really hemophilia then it would be there all the time, not just off and on.  Like any normal kid, Alexei most likely got bruised quite often from playing.  In hemophilia, even if the person gets the slightest bruise or cut, it is a disastrous problem.

There are different levels of hemophilia:  mild, moderate, and severe.  Has anyone figured out which one Alexei had?  Now that his remains have been located, will testing yield clues as to the nature of his condition?
Title: Re: Alexei and Hemophilia
Post by: pandora on September 13, 2007, 06:30:37 PM
This is just general post concerning hemophilla and I will take no offense at any correction -  there a 3 types of hemophilla: Hemophilla A, Hemophilla B and von Willebrand disease. Overall, each type is severe but in quickly reading about them, von Willebrand seems less severe of the three but I'm sure for the person who suffers from this, it isn't. Joint destruction also seems to be a evident with each type.
As far as how quickly a sufferer exhibits the outward signs of a fall, bump, etc., I couldn't find a concrete answer but I'm thinking as with many illnesses, it is determined by the individual's physical make-up.   
Title: Re: Alexei and Hemophilia
Post by: dolgoruky18 on September 14, 2007, 02:27:23 AM
From all the available evidence, it is clear that Alexei suffered from the haemophilia inherited from his carrier mother, the Empress. She in turn inherited it from her own mother, Alice, who inherited it from Queen Victoria who originated the mutant gene. Mutant genes can occur spontaneously. As an example we can cite Nicholas II himself. An examination of his remains revealed what is described as a "heteroplasmy". On discovery, this created some difficulty in the positive identification of his bones until the exhumation and examination of his brother, Drand Duke George, revealed the same condition.

The true cause of the Heir's illness was regarded as a State Secret right up until the end. A book published in 1915 entitled "A Bishop in Siberia" by Herbert Bury DD, the Anglican Bishop of Northern Europe, gives details of his reception in private audience by Nicholas II. At the end of the audience, an un-named courtier assured Bishop Bury that the Heir suffered from an unusual skin ailment. The true position was, of course, known to some important courtiers, the Imperial doctors in attendance and, of course, most members of the Imperial Family and other reigning families. A suggestion that Olga Nicholaievna might marry the Rumanian Crown Prince was skilfully avoided by Queen Marie who thought that Olga might be a carrier.

The imortant thing to remember is that Alexei's illness did affect aspects of his father's policies. Publicity might have affected the stability of International Finance before World War I if there had been doubts about the Succession.

Nicholas II did not make up his mind about the Succession until the last possible moment  -  and then only after a long discussion with one of his doctors. Then he abdicated on behalf of himself and his son  -  an act of dubious legality. He named his younger brother Michael Alexandrovich as his successor  -  this despite a total lack of consultation with his brother and the latter's morganatic marriage and the illegitimacy of his only son.

When Nicholas II suffered a serious illness in 1900, before Alexei was born, the question of the Succession was mooted among ministers and a draft ukaz prepared making it possible once again for females to succeed. This was never promulgated because Nicholas recovered.

Following Nicholas' abdication and that of his brother, the Throne was offered to Grand Duke Nicholas Nicholaevich  -  and even Prince Yussupov. Both, for their own reasons, rejected the idea.

Title: Re: Alexei and Hemophilia
Post by: dmitri on September 14, 2007, 06:47:02 AM
The illness of Alexis is all too often given as a reason for the downfall of the Russian Empire. It is a side issue. The importance of his illness is often overstated. Mirsule and revolution made the abdication necessary. It was not due to Alexis. Nicholas II was forced to abdicate. He first abdicated for himself in favour of Alexis. After consulting with Doctors, he decided after his legal abdication, to amend the original abdication and to abdicate for Alexis as well. It is difficult to imagine the legality of the amendment as from the time of his original abdication he no longer held any position in the governance of Russia. He was merely the former Tsar. He had no legal authority to do anything. I think once Michael avoided taking up the poisoned chalice of Tsar after the monarchy had been effectively overthrown, no person wished the position. Power had passed already to the Provisional Government. Romanov rule was at an end. It is a great shame that female rule was not pursued as some of the very best rulers of Russia were women.
Title: Re: Alexei and Hemophilia
Post by: pandora on September 15, 2007, 07:47:07 PM
The illness of Alexis is all too often given as a reason for the downfall of the Russian Empire. It is a side issue. The importance of his illness is often overstated. Mirsule and revolution made the abdication necessary. It was not due to Alexis. Nicholas II was forced to abdicate. He first abdicated for himself in favour of Alexis. After consulting with Doctors, he decided after his legal abdication, to amend the original abdication and to abdicate for Alexis as well. It is difficult to imagine the legality of the amendment as from the time of his original abdication he no longer held any position in the governance of Russia. He was merely the former Tsar. He had no legal authority to do anything. I think once Michael avoided taking up the poisoned chalice of Tsar after the monarchy had been effectively overthrown, no person wished the position. Power had passed already to the Provisional Government. Romanov rule was at an end. It is a great shame that female rule was not pursued as some of the very best rulers of Russia were women.

My thoughts exactly, Dmitri. Thank you. Alexis' illness was only a serious point of concern for the future of N & A's line of succession. 
Title: Re: Alexei and Hemophilia
Post by: anna11 on October 29, 2007, 05:52:12 AM
Quote
I'm not trying to be rude or annoying to anyone, but if Alexei's hemophilia was only episodic as you say, then wouldn't that in itself suggest that it could've been something else he had?  If it was really hemophilia then it would be there all the time, not just off and on.  Like any normal kid, Alexei most likely got bruised quite often from playing.  In hemophilia, even if the person gets the slightest bruise or cut, it is a disastrous problem

Alexei, at one time could be as normal as any child if he had no cuts or bruises. It was 'on and off' because sometimes, rarely he would not have any bruises or bumps. Hemophilia is not a disease like asparagus, where the sufferer is constantly affected. For example, is a sufferer is kept in a cushioned, quarantined room for his whole life he may not ever have anything wrong with him.

And some of his bruises would have been a lot like the bruises normal people get, just purple bumps that don't really have any affect.

Quote
If Alexei fell, how long would it take for his hemophilia to kick in?

It depends, as long as the bleeding took to start, which could be anywhere from a few days to only minutes.

Quote
Would it always act up?

Again, it depends. A big blow might by chance not cause internal bleeding, but if hit in the wrong place even a little it could be a disaster.

Quote
And could there be any variation on the degree of pain? (like if he bruised his knee one day and it got really bad and then latter it got the same sized burse would the attack only be slight?)

I don't really get the question, but I don't think so. If he bruised himself exactly the same way twice, I think the pain would be the same.
Title: Re: Alexei and Hemophilia
Post by: Terence on October 29, 2007, 12:27:47 PM
Quote
And could there be any variation on the degree of pain? (like if he bruised his knee one day and it got really bad and then latter it got the same sized burse would the attack only be slight?)

I don't really get the question, but I don't think so. If he bruised himself exactly the same way twice, I think the pain would be the same.


Actually, from what I just read recently, a repeat injury to the same spot would be worse, if it was a joint affected.  That was his problem w/ the knee at the end that crippled him.  The internal bleeding from a first injury would do damage to the structure of the joint, thus the damage the second time was worse and caused more severe pain.

Just what I got out of reading something, probably here lately.  I can't verify it's true, I'm no doctor, but the way it was written it made sense.

Terry
Title: Re: Alexei and Hemophilia
Post by: anna11 on October 30, 2007, 04:18:13 AM
I have a question that just occurred to be today. Losing teeth. Did Alexei ever have trouble when his baby teeth fell out? Because for me, with a slight coagulation problem losing teeth resulted in having a tissue in my mouth all day.

I imagine Alexei would have lost fair bit of blood when his teeth fell out, but i've never heard anything about it. Are there any mentions of this I haven't read?
Title: Re: Alexei and Hemophilia
Post by: Treehouse7 on October 31, 2007, 09:18:08 PM
Does anybody know or read what actual medical treatments Dr. Botkin and all the other doctors constantly present gave or did for Alexi?
They never seemed to do much but apply local pressure to stem bleeding and sit and watch.

The first actual treatment of any good I know of was not until 1934 when R.G. MacFarlane British pathologist started using Russell's viper venom to help hemophiliacs blood to clot. Commericially produced as "Stypen"-still made today. 1936 whole blood plasma was first used, it wasn't until 1939 Kenneth Brinkhous determined the "antihemophilic factor" clotting deficiency-now called "Factor VIII".
It appears that if Alexi had lived he would have been about 15 years away from some real medically effective treatments for his Hemophilia A disease-from July 1918 to 1934. With further advances in the 1940's and and 1950's like cryoprecipitate it seems a reasonable idea that Alexi could have lived a long life with his hemophilia under control.

In addition to the doctors unknown remedies, does anybody know or read what Rasputin was supposed to have done beyond prayer or calming Alexi's nerves and pain with talking?
Title: Re: Alexei and Hemophilia
Post by: dmitri on November 01, 2007, 02:57:29 AM
Supposedly God given powers according to Alexandra.
Title: Re: Alexei and Hemophilia
Post by: Naslednik on May 08, 2008, 05:41:38 PM
I have a question about the family's hemophilia. Currently, I am reading Olga Alexandrovna's (Nikolai's sister) biography written in the '60s by Ian Vorres.  Olga claims that all 4 girls carried the hemophilia gene and cites one anecdotal instance: Maria Nikolaievna was having her tonsils removed and bled tremendously, causing the doctor to panic and Alexandra to steady him and return him to his surgical task.  Is there any connection in females between a tendency to bleed and carrying the gene for hemophilia?  This sounded a bit spurious to me.
Title: Re: Alexei and Hemophilia
Post by: imperial angel on May 08, 2008, 06:21:06 PM
I've always been curious about that as well, but this link, or not, seems to be accepted in Marie's case ( that it might indicate a tendency to be a hemophilia carrier) , or at least I thought I read that on this forum. I doubt all the girls carried hemophilia, because that would be too many. Which girls did or did not carry hemophilia is a mystery lost to time, sad though that is- but all four? No, there is no evidence of that. I read that book awhile ago, and don't remember that part specifically, but in general, I do remember reading that.
Title: Re: Alexei and Hemophilia
Post by: anna11 on May 08, 2008, 06:39:38 PM
There is a connection. Female carriers often have lower than normal clotting, and bruise easily get heavy periods etc.

It's not always noticeable, it depends how strong the clotting factor in their normal X gene is. They have one X gene without a clotting factor (that they pass to their sons) and one normal X gene with clotting factor. The normal gene is usually enough to make the blood clot normally, but sometimes the clotting factor in that gene is not so strong so the female have some hemophilia symptoms.


There is no way to know how many of the girls carried hemophilia. Maybe all of them, maybe none. Maria may have been a carrier, the story fits but who knows, it may have just been a bad operation.
Title: Re: Alexei and Hemophilia
Post by: Naslednik on May 12, 2008, 05:13:18 PM
Thanks, that is interesting that in some females the clotting gene on the Y chromosome is less effective.  Imagine what Alexandra must have thought during that surgery.  But let me ask another question:  I remember Robert K. Massie, the author of Nicholas and Alexandra, discussing how many fewer virulent episodes Alexei had than his son, R K Massie III (who, by the way, ran for Lt. Governor of Massachusetts back in the '90's).  Does anyone have any idea how this disease manifests itself more strongly in some individuals than in others? With a milder form of hemophilia, it is possible that Alexei might have survived into adulthood.
Title: Re: Alexei and Hemophilia
Post by: anna11 on May 12, 2008, 11:54:22 PM
Females don't have a Y chromosome, they have XX, and clotting is in the X chromosome. That's why female's don't usually get hemophilia, they have 2 Xs to make up their clotting. But the son and his XY chromosomes only have one X so if it's affected then they have a problem.

Hmmm, well Robert Massie's son lived later than Alexei, the age difference maybe? There was much more medically known about it when Robert Massie's son was born, that might just be why.

I know that there are two types of hemophilia, hemophilia A and hemophilia B, where the problem is with different specific clotting factors. I don't know the difference exactly, but maybe one is more severe than the other.

Or maybe, the gene that is passed from mother to son varies in it's severity between women. Like, some womens affected X chromosome gene is more affected than other woman carriers.

These are just guesses, someone can probably answer better.
Title: Re: Alexei and Hemophilia
Post by: tanya on August 16, 2008, 01:21:33 PM
:)     Hello All, I am new to this but have been dealing with this "awful disease" as someone put it my entire life almost 28 years now. And it is not as awful now as it once was. I can only imagine how it was for them back then, but I wanted to say that PLEASE do not look at it as awful, because it is no longer that way.
 Granted I think it is the worst thing to ever hit our family...I lost my father because of it and many many others have lost from it as well. BUT I do have two sons that do have it and they are no different than anyone else! You cannot look at them and tell.

 I am sorry if I sound a little rude about it...I do not mean to come off as that way. I tend to be defensive though and if anyone out there has this touching their lives I would hope you know what I am talking about.

   Now that that is out of my system...I am just learning about the Russian Royals....it was told to my Grandmother when my father was born that she and my Grandfather BOTH had recessive genes and that is where it came from. NOW in all my research that I have done, and I have done a lot, I have never come across this explanation for it. I have heard of genetic mutation, and it just being in the chromosones that the good Lord gave you, but never this.

   IF there is anyone out there that can explain this paticular explanation to me I would be forever greatful.

   Thank You and I look forward to reading more about this family.
                                                Shan
I'm a hemophiliac and I'm a female. it is very rare for girls to have this disease but It can happen. and I Have only had one serious bleeding episode.   both of my parents were carriers of the gene so I got the disease.  I asked a Dr about it when i was eight and he said for me to be a hemophiliac i had to have the gene from both of my parents.
Title: Re: Alexei and Hemophilia
Post by: Marie-Catherine on August 16, 2008, 01:45:14 PM
Now that that is out of my system...I am just learning about the Russian Royals....it was told to my Grandmother when my father was born that she and my Grandfather BOTH had recessive genes and that is where it came from. NOW in all my research that I have done, and I have done a lot, I have never come across this explanation for it. I have heard of genetic mutation, and it just being in the chromosones that the good Lord gave you, but never this.

First of all, a man can't have a recessive gene of hemophilia. If he has the gene, he has the disease. It can be recessive for a female because her other chromosome X is able to ''cancel'' the hemophiliac gene. To be clear, here a diagram where the X in red represent the hemophilia gene.

For a woman there's two possible combination : XX - where she's just wanna be a carrier and XX (that means that both her mother was a carier or hemophiliac AND her father was hemophiliac.) --and here, that female would be hemophiliac.

For mans, if they receive the gene by their mothe like this : XY, they would automatically be hemophiliac becaue the Y chromosome can't "cancel'' the hemophilia gene. When a man is hemophiliac, their daughters would automatically be carrier, because they would get his X chromosome. Their sons, on the other hand, won't be affected by this because they receive the Y chromosome.

In your case,(it will be different if its your maternal grandparents) either if your paternal grandfather was or wasn't hemophiliac, that changes anything. From what you've said, your paternal grandmother wasn't hemophiliac, so she could have been a carrier, or like the Queen Victoria descendents, it could have been a genetic mutation. For you, your mother HAD to be a carrier, so you received XX chromosomes, and your chromosomes can't ''cancel" the hemophilia because they were both affected.

I hope it helped you !
K.
Title: Re: Alexei and Hemophilia
Post by: nena on December 15, 2008, 08:43:10 AM
From I have read, Alexei's hemophilia diagnosis was confirmed in 1908. Right? Or soon after his birth? Because then Alix became weaker......

Title: Re: Alexei and Hemophilia
Post by: Selencia on January 28, 2009, 05:01:42 PM
I have a question that just occurred to be today. Losing teeth. Did Alexei ever have trouble when his baby teeth fell out? Because for me, with a slight coagulation problem losing teeth resulted in having a tissue in my mouth all day.

I imagine Alexei would have lost fair bit of blood when his teeth fell out, but i've never heard anything about it. Are there any mentions of this I haven't read?

That is actually a very good question. I don't understand heamophilia but hearing about it always makes me think that a paper cut could bleed for hours.
Also thank you to Anna11 your explanation of how males get haemophilia is the only one that I have ever read that made sense to me.
Title: Re: Alexei and Hemophilia
Post by: Sarushka on January 28, 2009, 06:40:34 PM
I have a question that just occurred to be today. Losing teeth. Did Alexei ever have trouble when his baby teeth fell out? Because for me, with a slight coagulation problem losing teeth resulted in having a tissue in my mouth all day.

I imagine Alexei would have lost fair bit of blood when his teeth fell out, but i've never heard anything about it. Are there any mentions of this I haven't read?

That is actually a very good question. I don't understand heamophilia but hearing about it always makes me think that a paper cut could bleed for hours.

Small surface wounds like this can usually be controlled with bandages and direct pressure. Internal bleeding, bruises, and nosebleeds are generally much more problematic for hemophiliacs.
Title: Re: Alexei and Hemophilia
Post by: nena on January 29, 2009, 08:31:11 AM
Absolutely -- nose bleedings made his day very hard. I think I saw somewheer his baby -tooth.

Title: Re: Alexei and Hemophilia
Post by: Annetta on March 17, 2009, 01:49:13 PM
Sorry, if my question had been posted
but does anybody know if hemophilia could be cured? could a hemophiliac person get rid off it?
u know some people believe in Rasputin's prediction. he really helped to Alexey, this fact was confirmed by many sceptics. so Rasputin said that Alexey would be absolutely healthy at 16. is it possible or one more myth???
Title: Re: Alexei and Hemophilia
Post by: imperial angel on March 17, 2009, 02:49:56 PM
No, hemophilia is for life. Whether or not Rasputin helped Alexei or to what extent is another topic, but hemophilia doesn't magically disapear at any age. It's always an issue for the person who has it. Many hemophiliacs back then had short lives, but it's hard to know about Alexei. It's a myth Alexei would ever have been completely healthy.
Title: Re: Alexei and Hemophilia
Post by: Sarushka on March 17, 2009, 03:53:26 PM
so Rasputin said that Alexey would be absolutely healthy at 16. is it possible or one more myth???

Imperial Angel is correct that hemophilia is incurable -- even today. However, hemophilia is also unpredictable, so while he would never have been cured, I think it's possible that with a combination of luck and good medical care Aleksei *might* have enjoyed a relatively normal life.
Title: Re: Alexei and Hemophilia
Post by: nena on March 17, 2009, 04:29:54 PM
It is myth. Hemophilia was long life disease then.
Title: Re: Alexei and Hemophilia
Post by: nena on April 29, 2009, 03:11:19 PM
I've always wanted to have chronology of his attacks (caused by hurts). I read about 1907 (when fell from horse), 1912 (Spala) and late 1915/early 1916 one(nose bleeding). Well, by saying 'attack' I mean ones when he had hurt himself. And famous Tobolsk sledges down. I have heard it is rumor.

Some sources would be very helpful, also, did he have attacks every year?  True is, diary entries mention long recovering after those attacks, he wasn't able to walk, he had weight lost, etc.
Title: Re: Alexei and Hemophilia
Post by: DNAgenie on October 09, 2009, 02:51:25 AM
A scientific report in the latest issue of Science Express has confirmed that Alexei did carry a gene for Hemophilia type B, and both his mother Alexandra and one of his sisters, probably Anastasia, were carriers of the gene. The scientists have been able to extract DNA from the X chromosomes in bones of Alexandra, Alexei and his sister and have found a rare hemophilia gene in all three people.

Various news sites have details, including http://spittoon.23andme.com/2009/10/08/researchers-discover-the-true-identity-of-the-royal-disease/
Title: Re: Alexei and Hemophilia
Post by: Kalafrana on October 09, 2009, 04:51:43 AM
DNAgenie

Yes, I saw this too, and it certainly puts to rest any talk of survivors.

More generally, there is indeed no cure for haemophilia, although it can now be 'managed' much better than it used to be, and the danger of joint damage is much reduced. Alexei was never going to be healthy, and the effects of joint damage caused by bleeds would get worse as he got older. Some 20 years ago, as a trainee solicitor, I was involved in the HIV haemophilia litigation in the UK (in the 1980s most haemophiliacs then living were infected with HIV through contaminated Factor VIII and an action for negligence was brought against the NHS). My main role involved going through the medical records of about 30 haemophiliacs who were treated at a particular hospital, and it was noticeable that those in their 30s and 40s were rarely able to hold down jobs, partly because of their health and partly because of their education having been interrupted by long periods in hospital. They were also having to have hip and knee replacements as a result of earlier joint damage (obviously this would not have been possible for Alexei had he lived into adult life).
Title: Re: Alexei and Hemophilia
Post by: Ally Kumari on October 10, 2009, 04:40:14 AM
Supposing the missing sister was the carrier of Hemophilia, it would be Anastasia or Maria (I incline to the latter), which is quite "ironic" considering Maria was the one wanting to have a big family. Were the tests done also on the remains of other Grand Duchesses, or were they "lucky"?
Title: Re: Alexei and Hemophilia
Post by: jgutmaker on October 18, 2009, 07:38:00 AM
Supposing the missing sister was the carrier of Hemophilia, it would be Anastasia or Maria (I incline to the latter), which is quite "ironic" considering Maria was the one wanting to have a big family. Were the tests done also on the remains of other Grand Duchesses, or were they "lucky"?

My understanding is that the remains of the other Grand Duchesses suggested that they were not carriers (only the bones identified as Anastasia and of course, Empress Alexandra)
Title: Re: Alexei and Hemophilia
Post by: Grand Duchess Valeria on March 05, 2010, 12:35:57 PM
So Olga and Tatiana did not have it but Anastasia and Maria?
Title: Re: Alexei and Hemophilia
Post by: Kalafrana on March 06, 2010, 05:14:26 AM
If the identifications are correct. As I understand it, only one of the girls seems to have been a carrier.

Ann
Title: Re: Alexei and Hemophilia
Post by: Grand Duchess Valeria on March 06, 2010, 05:21:01 AM
An which one, Ann?
Title: Re: Alexei and Hemophilia
Post by: Margot on March 06, 2010, 05:27:39 AM
I beleive the general consensus is that Maria N. was the carrier due to the bleed she suffered during the famous tonsil operation! This is why people seem to assume that it was Maria's remains found with those of Alexei as the Hemophilia thingummy bob wahstsit DNA caboodle was found in the female remains. It is not set in stone but just a rational suggestion as only one daughter was a confirmed carrier due to DNA results and Maria seems the most likely candidate.
Title: Re: Alexei and Hemophilia
Post by: Dust_of_History on March 06, 2010, 05:47:37 AM
I beleive the general consensus is that Maria N. was the carrier due to the bleed she suffered during the famous tonsil operation!

Are there any medical records that confirm the tonsil operation? If she really had an operation I think it is very likely that she's the carrier. 
Title: Re: Alexei and Hemophilia
Post by: Grand Duchess Valeria on March 06, 2010, 05:59:20 AM
Be careful, medicine says that thus a haemophiliac does not bleed more intensely than a normal person, but can bleed for a much longer amount of time.

I guess, that what Olga A. and others reported based on their sensibility for this theme and maybe - I don't pretend that! - they overestimated the indications. But thats just my opinion. ;)
Title: Re: Alexei and Hemophilia
Post by: Ally Kumari on March 06, 2010, 06:06:41 AM
Quote from "The last Grand Duchess" by Ian Vorres:

"She (Olga Alexandrovna) recalled the panic which broke out at Tsarskoe Selo on the day that Grand Duchess Marie had her tonsils removed. It was expected to be a routine operation by Dr. Selerioff, whom, in fact, the Grand Duchess had introduced to Alicky. The operation had barely begun when the young Grand Duchess began to haemorrhage. Taken by complete surprise, the doctor ran from the operating table in utter fright. And it was then, in a moment of extreme crisis, that the strengh of Empress Alexandra was revealed. "Alicky calmly grabbed the trembling doctor by the arm and said quietly but sternly, "Will you please finish the operation, Doctor." He managed to do so succesfully, despite the persistent bleeding."
Title: Re: Alexei and Hemophilia
Post by: TimM on April 15, 2010, 10:47:46 AM
That was the sad thing about Alexei.  Even if there had been no revolution, he probably would have died before he was 25.  Now, there are drugs that can help someone with hemophilia, but back then, forget it.  The slightest scrape or bump had the potential to be fatal to him.
Title: Re: Alexei and Hemophilia
Post by: clockworkgirl21 on April 19, 2010, 05:06:19 PM
I think it's so amazing we know which girls were carriers now. We used to speculate, but thought we'd never have anything more to tell us.

Since I sometimes have trouble understanding what I'm reading, is it this simple? The girl who was missing until recently with Aleksey(whether Maria or Anastasia) was the only daughter carrying the gene?
Title: Re: Alexei and Hemophilia
Post by: Clemence on June 27, 2010, 03:59:47 PM
Supposing the missing sister was the carrier of Hemophilia, it would be Anastasia or Maria (I incline to the latter), which is quite "ironic" considering Maria was the one wanting to have a big family. Were the tests done also on the remains of other Grand Duchesses, or were they "lucky"?

My understanding is that the remains of the other Grand Duchesses suggested that they were not carriers (only the bones identified as Anastasia and of course, Empress Alexandra)

I read the article too, my opinion is that all of the girls'remains must have been tested.

Could someone help me understand this one from wikipedia?

Quote

Because the last known descendent with haemophilia of Queen Victoria's family tree died in the 1940s, the exact type of haemophilia found in this family remained unknown until 2009. Using genetic analysis of the remains of the assassinated Romanov dynasty, and specifically Tsarevich Alexei, Rogaev et el were able to determine that the "Royal Disease" is actually haemophilia B.[5]

http://en.wikipedia.org/wiki/Talk:Haemophilia_in_European_royalty

so why couldn't someone perform the tests on the rests of other known discendants of Queen Victoria BEFORE 2009?

Title: Re: Alexei and Hemophilia
Post by: Kalafrana on June 28, 2010, 03:44:05 AM
'so why couldn't someone perform the tests on the rests of other known discendants of Queen Victoria BEFORE 2009?'

Presumably because you would need to exhume dead descendants. I don't know about other countries, but in Britain you have to get a court order to permit an exhumation, and this is quite difficult. Obviously, you also need the approval of the deceased's family, and I doubt whether the British royal family would approve. Prince Philip did provide a blood sample to assist with the identification of Alexandra et all, but that is a bit different from digging up a corpse.

I am inclined to think that haemophilia has 'bred out' of Queen Victoria's descendants, so that there is nobody living with the gene, certainly not in this country.

There was a recent case of researchers into Spanish 'Flu who got an exhumation order for Sir Mark Sykes, a British diplomat who died of the disease in 1919 and was buried in a lead coffin (which is, apparently, critical in providing for possible survival of the virus). His grandchildren were happy to support the research, on the basis that if the virus could be properly identified there was a good chance of developing a vaccine. Unfortunately, the coffin had split and they didn't get anything useful.

Ann
Title: Re: Alexei and Hemophilia
Post by: blessOTMA on June 28, 2010, 08:20:00 AM
It is remarkable that out the four girls , only one was a carrier. That's a better batting average than the Hesse girls had . It's remarkable we know what they did not...and could only find out by having children .
Title: Re: Alexei and Hemophilia
Post by: amartin71718 on June 28, 2010, 11:04:58 AM
Which of the girls was a carrier?
Title: Re: Alexei and Hemophilia
Post by: blessOTMA on June 28, 2010, 11:14:27 AM
Which of the girls was a carrier?
Maria...which was pointed out is so ironic because of all of them , she wanted children the most. It's all in the thread. Makes very interesting reading. I say Maria, but as you know even who was Maria and who is Anastasia is disputed.
Title: Re: Alexei and Hemophilia
Post by: feodorovna on May 16, 2011, 10:11:07 AM
I am constantly amazed by how well Alexei looks in most photos. A bonny baby became a beautiful child then grew to be a fine handsome young man. Despite the near fatality of several severe episodes this child seemed to have the most amazing capacity to bounce back from the jaws of death which rather begs the question, if Russia had not "changed" might it have been possible, with continued care from whatever source, for him to have survived long enough to marry and have children? His great-uncle Leopold managed to.
Title: Re: Alexei and Hemophilia
Post by: Kalafrana on May 16, 2011, 10:29:24 AM
I suspect that Leopold was a much quieter person than Alexei and so had fewer accidents. I think he might well have followed the example of the two Spanish haemophiliacs and Rupert of Teck and died as the result of a car accident in his 20s.

Ann
Title: Re: Alexei and Hemophilia
Post by: Naslednik on July 04, 2011, 12:29:20 PM
Robert K Massie mentioned (I'd have to track down where) that he was amazed at how much less virulent Alexei's hemophilia was than his own son's (Rev. Bob Massie).  It would be interesting to hear a geneticist explain how the disease expresses itself in different intensities.
Title: Re: Alexei and Hemophilia
Post by: Kalafrana on July 04, 2011, 12:35:16 PM
DNA tests have recently established that 'royal' haemophilia was a 'severe form of haemophilia B'. Haemophilia B is normally less severe than haemophilia A, which is presumably what young Robert Massie had.

Ann
Title: Re: Alexei and Hemophilia
Post by: LisaDavidson on July 05, 2011, 01:04:53 AM
As to testing of Victoria's descendants before 2009, it was not known until the late 1940's that there were distinct types of hemophilia, which was certainly a factor in delaying any possible testing.
Title: Re: Alexei and Hemophilia
Post by: LadyAstraea on December 12, 2011, 10:24:06 AM
So yesterday in the news I read that it is now possible (in some cases) to treat Hemophilia B with gene therapy.

Here is the article at the NY Times website: "Treatment for Blood Disease Is Gene Therapy Landmark"

http://www.nytimes.com/2011/12/11/health/research/hemophilia-b-gene-therapy-breakthrough.html (http://www.nytimes.com/2011/12/11/health/research/hemophilia-b-gene-therapy-breakthrough.html)

Too bad it's come 94 years too late for Alexei.

*edit: I don't know why the direct link wants you to sign in to the website, but if you search the title "Treatment for Blood Disease Is Gene Therapy Landmark" on google, the article should come up.
Title: Re: Alexei and Hemophilia
Post by: RealAnastasia on December 12, 2011, 09:40:45 PM
DNA tests have recently established that 'royal' haemophilia was a 'severe form of haemophilia B'. Haemophilia B is normally less severe than haemophilia A, which is presumably what young Robert Massie had.

Ann

I've read that both "Haemophilias" - A and B - has different grades of severity, this is wake, mild and severe. But haemophilia  - as any other disease - uses to have different manifestation in each patient. I knew a patient with severe haemophilia "A" - I live very closeto an Haemophiliac Center in Buenos Aires - who had had little problem with it...but he was extremely quiet. he didn't like to climb trees or play soccer as a child; he rather liked to read and play cards...On the other hand, there was a young man with mild haemophilia who was always having to put Factor VIII , since he was very mischievous and spunky.

RealAnastasia.
Title: Re: Alexei and Hemophilia
Post by: Joanna on January 15, 2018, 05:15:00 PM
Tsarevich Alexei’s hemophilia treatment in the Alexander Palace, Tsarskoe Selo

https://winterpalaceresearch.blogspot.ca/2018/01/a-tank-of-mud-in-alexander-palace.html

Joanna