Alexei and Hemophilia

[TimM]

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.

[clockworkgirl21]

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?

[Clemence]

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?

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?

[Kalafrana]

'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

[blessOTMA]

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 .

[amartin71718]

Which of the girls was a carrier?

[blessOTMA]

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.

[feodorovna]

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.

[Kalafrana]

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

[Naslednik]

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.

[Kalafrana]

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

[LisaDavidson]

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.

[Astraea]

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

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.

[RealAnastasia]

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.

[Joanna]

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