Author Topic: Charities and Haemophilia  (Read 5200 times)

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Offline Anna Francisevna

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Charities and Haemophilia
« on: October 03, 2014, 07:12:19 PM »
During the late 19th century and early 20th century, European royalty started sponsoring charities.  (Please correct me if I'm wrong).  Since haemophilia was in most of the royal families descended from queen Victoria (English, German, Russian, Spanish, etc...) did any of the royals start/give any money to charities for haemophilia?  Were there any charities for haemophilia back then, international or national?  And did Alix know of about any of these and donate to them?  We already know about her charity bazaars and knitting circles during the Russian-Japanese War and WWI, so why wouldn't she have supported haemophilia charities?
« Last Edit: October 03, 2014, 07:22:30 PM by Anna Francisevna »

Offline Forum Admin

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Re: Charities and Haemophilia
« Reply #1 on: October 04, 2014, 09:51:16 AM »
The simple answer to all questions is: No.

Offline Rodney_G.

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Re: Charities and Haemophilia
« Reply #2 on: October 04, 2014, 01:56:05 PM »
Though Forum Administer is correct, there is a  slightly more nuanced answer.

First, I don't think haemophilia was sufficiently widespread at that time to warrant a significant charitable organisation, at least not as compared to major issues like war casualties, their families, major poverty, the major fatal or debilitating diseases, orphans,  etc. The incidence of haemophilia was, and remains, quite low.

Also, in some cases, most notably with  the Romanov Imperial couple and their haemophiliac son and heir to the Russian throne, Alexei, it was a very well-kept secret which the Emperor and Empress for their own reasons wished to keep. I couldn't say for certain but I think the same rationale applied to the British, German , and Spanish royal families.
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Offline edubs31

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Re: Charities and Haemophilia
« Reply #3 on: October 04, 2014, 05:36:27 PM »
Rodney said it perfectly.

A disease that effected almost no one and was very poorly understood at the time would probably have never received the "ice bucket" charity treatment we see even rare diseases receive today.

And of course what he said about the families of such victims, especially N&A, not being particularly keen as to having the affliction made public is the other side of the coin. I get the sense that even if Alexandra had wanted to raise charity dollars or fund research out of pocket she wouldn't have done so. The simple reason being that someone would have asked "Why of all things haemophilia your majesty?"
Once in a while you get shown the light, in the strangest of places if you look at it right...

Offline Anna Francisevna

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Re: Charities and Haemophilia
« Reply #4 on: October 04, 2014, 07:29:19 PM »
Thank you all for your answers.  I suppose it'd have indeed raised some questions if Alix had been interest in/wanted to donate money to a haemophilia charities, if they even existed at the time.  I do know that America published a scientific article about haemophilia before Alexei was born.  (I'll try to find it).  Was it being researched in any other countries?  Sorry if I was being ignorant.
« Last Edit: October 04, 2014, 07:35:29 PM by Anna Francisevna »

Offline edubs31

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Re: Charities and Haemophilia
« Reply #5 on: October 04, 2014, 10:17:09 PM »
Quote
Sorry if I was being ignorant.

Not at all.

Quote
Was it being researched in any other countries?

Perhaps someone else knows the answer to this...?

Quote
I do know that America published a scientific article about haemophilia before Alexei was born.  (I'll try to find it)

I would be interested in reading that. Please do post if you find it.
Once in a while you get shown the light, in the strangest of places if you look at it right...

Offline Anna Francisevna

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Re: Charities and Haemophilia
« Reply #6 on: October 05, 2014, 03:27:37 PM »
I found some information.  According to this website: https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders, an American doctor named John Conrad Otto published an article about haemorhagging and the symptoms of haemophilia in Philadelphia for the New England Journal of Medicine in 1803 without realizing what the disease was.  His name keeps popping up whenever I search history of haemophilia.  If only I could find the article now...

Offline edubs31

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Re: Charities and Haemophilia
« Reply #7 on: October 05, 2014, 07:28:14 PM »
Thanks for posting. Interesting that even in the 1950s, when I was led to believe major breakthrus were made, the advancement in medical remedies was only marginal. It wasn't until much later that hemophiliacs lived normal life expectancies.
Once in a while you get shown the light, in the strangest of places if you look at it right...