Do you have it? Does someone you know have it? What are some of the challenges with it? Have you ever had/seen a close call? Tell me all you can/want!
not even one…
Are you interested in Hemophilia A (Factor VIII deficiency), Christmas Disease (Factor IX deficiency), Von Willebrand’s Disease or one of the combinations?
In the '70s, I cared for boys from two families with Hemophilia A. One family was very compliant the other was not. The compliant boys cared for themselves & were hardly ever admitted to the hospital.
Then non-compliant ones were in the hospital every week, it seemed. I gave lots of Factor VIII and blood transfusions to them.
Not trying to pry, but why do you need to know? Is a child of yours affected, or the child of a sibling?
Whatever it is, if you are having to deal, best of luck.
I highly recommend the book Journey by Suzanne Massie. It’s an unforgettable, deeply affecting account of the challenges that Suzanne and her husband Robert Massie faced bringing up their son who has hemophilia. It was published in 1975 and Alibiris offers used copies. http://www.alibris.com/ It’s the best book on the subject I’ve ever read.
Two other books you might find interesting are:
Nicholas and Alexandra by Robert Massie (yes, same guy as above), also available at Alibris. In it, Massie makes a case that the hemophilia of the last Tsar’s heir was one of the causes of the Russian Revolution.
Queen Victoria’s Gene by D.M. Potts and W.T. Potts about how the hemophilia gene entered the royal bloodlines of Europe and the effects of the disease on the ruling houses of Russia, Prussia and Spain. Also available at Alibris.
I thought it was only an indirect cause as the Tsarevich’s hemophilia was kept secret. The public only knew that the Tsarina called in a lot of strange people, including a certain mad monk.
yep, alexi’s hemophilia was very well hidden at the time. one of those things that lends credence to the southern saying: “some prayers the devil answers”. it seemed to have come out of the woodwork around or after ww2. should have gone with plan b, change the rules of succession.
treatment had changed quite a bit since “journey” was written. it is a very well written book and very interesting. the massies interest in things russian grew out of their son’s condition.
in the 80’s and 90’s hemophiliacs took a very hard hit from hiv/aids. ryan white was the most well known hemophiliac to die. an excoworker of mine had quite a few nephews with hemophilia, somewhere around 10ish, all but 2 passed away from transfusions.
I’ve known a few boys with hemophilia, when I was working at a camp that was mostly for kids with cancer, but included some with hematological issues, transplants, etc. They were normal kids, except when one got a tiny, tiny pinprick, we had to keep pressure on it for ages (at least an hour, probably two) to stop it from oozing blood. I asked one what would happen if he needed surgery, and he matter-of-fact-ly explained to me how they’d just get his factor levels up to 100%, and then it would be like surgery on anybody else. (He and I were fairly close, and he was quite open about his condition. Generally, we avoided asking the kids about their medical conditions - if they wanted to talk, fine, but we wouldn’t push.) They went to normal schools, did normal kid stuff, and probably didn’t need to be in a special camp, but I suppose it was good to be somewhere where there would always be medically trained people and an aware, responsible staff.
Ah, the Roomate Years. The scene: I’m on the couch, engaging in some mild after-dinner burping and watching the tube. My roomate Jason was in the kitchen. It was his turn for dishes.
shattering noise
“Dude! What the hell did you just break in there?”
“Half the glasses in the sink. Put your shoes on and drive me to the hospital.”
“Huh?”
“I’m bleeding all over the damn place and it’s not going to stop. Get me to the hospital, dumbass.”
Yeah, my roomie and I were tight. 
Nothing like a blood-spattered apartment, blood-covered seat in the car, and twenty-two stitches to teach you first-hand the importance of being careful when you, y’know, can’t stop bleeding like a regular Joe can.
To this day I razz him about it. “So, J-man… broken any glasses lately?” It took roughly forever for the scar to form, and his arm was all purplish and nasty-looking for weeks due to (I’m told) bleeding under the skin.
I can no longer deny my evil impulses. I am, in fact, a hemophile. I find my self obsessed with hemos.
True, but the fact that it was secret is what made it worse-no one understood WHY the Tsarina always seemed so aloof, why the Tsarevich was rarely seen, or why they trusted Rasputin.
Massey also write a follow up book entitled “The Romanovs: the Final Chapter.”
I would also give SOME of the information in “Queen Victoria’s Gene” a skeptical look. The idea that she wasn’t her father’s real daughter is absurd. She looked just like the Duke of Kent, and from what I gather, the Duchess’s family did have some suspicious deaths in of young boys in the past.
I think there are also some books about Prince Leopold, who was the first royal hemophiliac, and the youngest son of Queen Victoria.
One of my profs in college had Hemophilia - though I didn’t know it at the time.
It was apparent that he had medical issues though.
He died some years later from AIDS.
Brian
Oh, I agree. Potts & Potts were out in left field on this theory. Victoria was in every way - looks, labile personality and sex drive - a genuine Hanover, no doubt about it. However, I found most of the rest of their book fascinating, for instance when they write about the parents of the Crown Prince of Yugoslavia rejecting Grand Duchess Olga, the eldest daughter of Nicholas and Alexandra, as his bride. They turned down the match because they knew Olga had a 50% chance of carrying the hemophila gene. If that realization had sunk into royal noggins before Nicholas married Alexandra or Alphonso XIII married Princess Ena, two revolutions might have been averted.
That wasn’t the Crown Prince of Yugoslavia, it was the Crown Prince of Roumania. The Yugoslavian Prince, or rather, Serbian Prince (Yugoslavia didn’t exist until after the first World War) was actually very interested in Olga, and had approached Nicholas about a betrothal. Nicholas told him that he’d have to ask Olga himself, but WWI prevented all of that.
Olga was also very close to the Crown Prince’s (his name was Alexander, later Alexander I of Yugoslavia) sister, Yelena, who married into the Romanov family, and Yelena was hoping that a romance might blossom between the two of them.
One of my best friends, from way back, has it. It’s important to realize that even though it’s uncurable, it is treatable. He’s perhaps a bit less athletic than most guys (too much risk of injury), but other than that, he leads a basically normal life (well, not “normal”, any more than any of my friends are, but that’s another matter). He always knows exactly where his emergency meds are, and sometimes he has to stay hooked up to an IV for an hour or two at a time (which just means that those are the times he watches TV, plays computer games, or reads, which he would do anyway). He’s also one of the unfortunates who caught AIDS back in the 80s, but thankfully, it’s in remission, and seems (from what I can see) to have even less impact on his life than the hemophilia. And, of course, that’s no longer a risk, since the blood agencies now screen for HIV specifically, and for transmissable diseases in general, much more tightly.
:smack: You’re right! It was Roumania. Don’t tell them over at the Alexander Palace message board about my little lapse of memory. I’m guessing you’re one of the AP denizens, Guinastasia?
Indeed!
Oh, interestingly enough, the sister of Prince Carol (the Roumanian prince in question) ended up marrying Prince Alexander, and became Queen Marie-Mignon of Yugoslavia. Their grandson is the current Crown Prince of Serbia.
the internal bleeds are worse than the outward bleeds.
bleeding into joints is tough to control and will cause the bones to deteriorate. it doesn’t have to be a trauma thing, ie break or sprain. sometimes there will just be a bleed in a knee joint from getting up from the couch. the new treatments have really helped in this area.
You want to avoid ever needing to self insure, as well. A good friend of mine has a hemophiliac husband, and when he was self employed, insurance was really expensive. He has a different job now with paid insurance.
Then we’ve doubtless met before, Guinastasia. Small world! I used to be a regular poster at the AP, but I got tired of that pain in the ass Marlene and let my membership lapse. If ever a board needed a Pit, it’s the AP.