Author Topic: Alexei and Hemophilia  (Read 162162 times)

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Offline anna11

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Re: Alexei and Hemophilia
« Reply #285 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?


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Offline Treehouse7

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Re: Alexei and Hemophilia
« Reply #286 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?

Offline dmitri

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Re: Alexei and Hemophilia
« Reply #287 on: November 01, 2007, 02:57:29 AM »
Supposedly God given powers according to Alexandra.

Offline Naslednik

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Re: Alexei and Hemophilia
« Reply #288 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.

Offline imperial angel

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Re: Alexei and Hemophilia
« Reply #289 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.

Offline anna11

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Re: Alexei and Hemophilia
« Reply #290 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.
« Last Edit: May 08, 2008, 06:42:11 PM by anna11 »


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Offline Naslednik

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Re: Alexei and Hemophilia
« Reply #291 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.

Offline anna11

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Re: Alexei and Hemophilia
« Reply #292 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.
« Last Edit: May 12, 2008, 11:57:05 PM by anna11 »


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Offline tanya

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Re: Alexei and Hemophilia
« Reply #293 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.

Offline Marie-Catherine

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Re: Alexei and Hemophilia
« Reply #294 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.
« Last Edit: August 16, 2008, 01:50:10 PM by Marie-Catherine »


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Offline nena

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Re: Alexei and Hemophilia
« Reply #295 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......

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Offline Selencia

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Re: Alexei and Hemophilia
« Reply #296 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.

Offline Sarushka

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Re: Alexei and Hemophilia
« Reply #297 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.
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Offline nena

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Re: Alexei and Hemophilia
« Reply #298 on: January 29, 2009, 08:31:11 AM »
Absolutely -- nose bleedings made his day very hard. I think I saw somewheer his baby -tooth.

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Offline Annetta

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Re: Alexei and Hemophilia
« Reply #299 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???
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