Wednesday, April 17, 2013

World Hemophilia Day

You know I love a crazy holiday.  Actually I guess they aren't "holidays" so much as commemoration days.  Or raise awareness days.  Yup, I love a crazy Raise Awareness Day.  & today is...of course...World Hemophilia Day.

The thing about hemophilia is it is probably better known than it ought to be.  I am not suggesting that we should ignore it, just that as fairly rare (dare I say obscure) blood conditions go, your average college educated adult in the western world more or less knows the primary symptom of hemophilia.  This is because of two large world can say Events, you can say Plagues.  I am talking of course about AIDS & Queen Victoria.

One thing we know about hemophilia today is its hereditary nature (OKay what was taught about hemophilia circa 198X, the last time I sat in on a high school science class of Gregor Mendel et al); what we said then as Queen Victoria was a carrier.  Women did not suffer from the disease (baby girls might, but medical science being what it was those that did, did not survive babyhood never mind having their own children).  & Queen Victoria was a prodigious producer of offspring (like those pea plants!).  & those offspring sat in some high profile chairs themselves, lending their hemophilic DNA to the next generation.  Once those cousins started having children together, all hell broke loose.  No really, imagine the Bolsheviks without a Tsar distracted by a lack of heir. I'm not saying hemophilia turned the tide, I am just saying it was a factor.

Flash forward to that same high school classroom circa 198X where we were told that hemophilia was a done disease, kinda.  Transfusions were common place enough that a person could expect to live a long life, not necessarily in the picture of health but well into adulthood. 

In 1992/3, I met an interesting family.  The father had just died of AIDS, the mother was raising the two daughters & their son alone.  The son was HIV positive & has since died.  One of the two girls had a her tubes tied for her 21st birthday.  She had trouble finding a doctor that would do it to such a young woman but she was determined the buck should stop with her.  While transfusions were a miracle & no doubt extended father's & son's lives, those years came with a price.  & a mad scramble to make sure AIDS didn't get handed over to the hemophilia-gene-carrying-but-not-suffering daughters & the hemophilia-bystander mother.

Which brings me to sickle cell anemia (you can read up on your own if you like). SCA is also hereditary, also a malfunction in the blood (to simplify both), but many sufferers lived to reproduce before the age of transfusions & it was & is much more widespread.  There are famous sufferers of SCA; I BINGed & discovered Miles Davis, a person whose biography I read once-upon-a-time & although this fact was probably in it, it just didn't stick.  I BINGed because the only famous person I knew of who had SCA was fictional:  Corpora Klinger on MASH. 

There is a Sickle Cell Anemia Awareness Day.  it is June 19th.  I cannot tell you much else about it though, because the website I found had not been updated in almost 2 years.  World Hemophilia Day on the other hand has been publicized by Novo Nordisk.  I guess there isn't all that much cash to be made treating SCA.

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