Alexei and Hemophilia

[grandduchessella]

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".

[nerdycool]

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....  

[Pravoslavnaya]

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.

[grandduchessella]

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.

[hemphiliamom]

[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

[bookworm8571]

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.

[hemphiliamom]

 ;)

  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

[chatelaa]

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!

[Forum Admin]

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

[chatelaa]

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

[hemphiliamom]

Thanks!

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

Thanks, Shan

[chatelaa]

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

[Forum Admin]

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

[hemphiliamom]

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

[chatelaa]

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