Caught me monologue-ing...

Published by Quill Inkwell in the blog Quill Inkwell's Blog of the Odd and Curious. Views: 499

Hemophilia is a genetic blood disorder linked to the X chromosome that causes a deficiency of one of two clotting factors in the blood: Factor VIII (8) or Factor IX (9). When one is missing or deficient in one of these two clotting factors, it takes longer for wounds to heal (cuts, internal bleeds, and the like). A deficiency in Factor VIII is called Type A, while a deficiency in Factor IX is called Type B. There are three degrees of Hemophila: Mild, Moderate, and Severe. Hemophilia occurs in one out of every 1000 males. Females carry the gene and can pass it on to their sons. It's exceedingly rare for a female to show any symptoms of hemophilia, but it's not completely unheard of (in fact, I once met a woman who had hemophilia). There is a variation of hemophilia that occurs in females called Von Willenbrand's Disease. Its symptoms are very similar to that of Hemophilia.

I have Severe Hemophilia Type A.

Because of my hemophilia, I have lost nearly all use of my right knee and I have to wear a brace that completely immobilizes my right leg. Due to this, I also have arthritis in both of my ankles. A few years ago, I had an operation on my right ankle that was supposed to help with my arthritis. The doctor told me that the next step would be fusing the ankle joint, which would greatly reduce the mobility in my ankle (which I hardly have, anyway).

On the whole, this doesn't pose much of a problem for me, (since I've had the brace since I was six and have adapted quite well to it). If I limit my physical activity and take my prescribed medications, in theory, my hemophilia shouldn't pose any kind of issue at all.

But then, there are the spontaneous bleeds that occur for no good reason whatsoever. I get bleeds in my ankles when I put too much wieght on them for too long of a time, or if I jar then just right. I was carrying air conditioners down a fight of steps yesterday, so it could have been that, or...it could have happened last night when I kicked a kitchen wastecan in a moment of childish...stupidity.

I'm not entirely sure what I did this time, but as of right now, I'm sitting in front of my computer in no small amount of pain (but I think my painkillers are starting to kick in as I type this). I decided to write this when I got home as just a way to vent. It's nothing that anyone needs to worry themselves about, and I'll probably be fine enough to go to work tomorrow (albeit with crutches).

I'm curious, are there any hemophiliacs in the audience? Statictically, there should be at least one brony here who has it. Fess up.
Oct 9, 2012
  • NotWhatWeExpected
    NotWhatWeExpected Oct 10, 2012
    I saw the first paragraph explain Hemophilia, and I was just like "oh no, don't have it don't have it don't have it."
    TL;DR'd the first paragraph because I know what Hemophilia is, read the second paragraph.

    Man, that just SUCKS!

    I've never known anyone with hemophilia before. Time for possibly offensive question time (if you don't mind, that is).

    What exactly do you do if you sustain such an injury? Is there some specific procedure you go through to stop it?
  • Legion
    Legion Oct 10, 2012
    Oh, wow. That must suck. :(

    Hope your leg feels better soon! :smile:
  • Quill Inkwell
    Quill Inkwell Oct 10, 2012
    Let's just get one thing straight: There isn't a question that anyone can ask that will offend me. :smile:

    Treating an injury is pretty much the same as treating someone who is normal: Rest, Ice, Compression, Elevation.

    The only difference is, if the bleed is bad enough, I have to inject myself with synthetic Factor VIII. (It's derived from cows. Moo!) It's a fairly simple injection and I've been doing myself since I was twelve.

    How do you know what Hemophilia is? Most people hear about it in science class (I think most textbook devote an entire paragraph to it).
  • SoulEmber
    SoulEmber Oct 10, 2012
    Would it help if you injected yourself with the missing clotting factor at other times, rather than only when you have a major bleed? If you did get surgery on your ankle, would the hemophilia complicate that very much? Sorry to hear that you're struggling with this condition. *Hugs*
  • NotWhatWeExpected
    NotWhatWeExpected Oct 10, 2012
    People have been offended by the wierdest things I've asked, so I was just putting that out there to show I didn't mean any harm :derpe:

    My dad is a doctor. He will randomly tell me stuff. Like... useless doctor stuff. Your brain stopping it's growth at age 18 and 72 muscles being required for effective speech are two random things.
  • Quill Inkwell
    Quill Inkwell Oct 10, 2012
    A lot of hemophiliacs infuse prophilactically (I'm sure I spelled that wrong), or they'll infuse before doing a major task (like moving furniture, running, or playing hockey (I met him, too! ^_^). I infused prophilactically for a while but I chose to stop for a couple of reasons, but specifically because I only use veins in my arms for infusing (I always miss in my hands) so by the end of a normal week, there was so much scar tissue that it would be like trying to stick the needle through leather.

    Most surgical procedures are complicated by my hemophilia. For the first three days after my ankle surgery (it was to remove a spur, by the way), I had to unfuse every two hours with around 60cc of factor (For me, that's around a 300% dose). Every time I have a major dental procedure (like wisdom tooth removal) I have to be put under and once again treat with large amounts of factor.

    No harm done, really. I get more offended when people don't ask about my condition and just make assumptions. I'd also rather have people ask me than my friends or co-workers (it's happened before). I love educating people, so please, ask away!

    I'm out of factor until tomorrow, and I was only able to infuse with a 50% dose. Once I get the chance to infuse myself again, Imy ankle will be fine.

    My leg...unfortunately, there's nothing that can be done for it...
  • Legion
    Legion Oct 10, 2012
    Well, personally I heard about it because (in typical Twilight fashion) I read a book about it. ^^

    Actually multiple books. One was a non-fiction book with all sorts of stuff about the disease, and another two had characters who had the disease. I don't remember what they were called, though.

    I have always thought about how annoying (to put it lightly) it would be to have it, since you'd have to be extremely cautious and careful about everything you did, and the smallest cut could have you in the hospital, or at least injecting, as you mentioned.
  • Quill Inkwell
    Quill Inkwell Oct 10, 2012
    Now I wonder what those books were. The only book I read that had a character who had Hemophilia was...gosh I can't remember it, but it was about Prince Alexei. Of pre-Soviet Russia. The one who was allegedly brainwashed by Rasputin. (Don't even get me started on that. Rasputin was a much better person than most give him credit for.)

    A bit of trivia: Homer Simpson mentioned that he had hemophilia in a blink-and-you-missed-it line on one episode of The Simpsons.

    *GLARE*

    This is one of my biggest pet peeves.

    The whole "smallest cut" thing is a myth. Hemophiliacs are just as durable as normal people. We bleed longer not faster. A papercut won't kill us. Mainly, if my lip starts bleeding or something, I won't die from blood loss, but it will be a pain in the butt because it'll just slowly seep out all day long.

    On that vein (pun, totally intended), it is very annoying to have hemophilia at times. When I was younger, I was forbidden to play any teams sports by my parents, which means that I had to miss out on a lot of the fun in growing up. When I was finally allowed to try out for the basketball team (in high school), I twisted my ankle during tryouts and really hurt myself. After high school, I tried to play softball in a church league, but on the very last day of practice, I hurt myself again! :sigh: I don't even bother walking at a brisk pace anymore...

    I don't want to get into it here (for angsty reasons, mostly), but hemophilia has had a huge impact on my childhood beyond just being left out of sports and activities... There was also the name-calling and being (MIS)diagnosed as being "retarded"...

    Umm... Oh wow. That was kind of depressing, wasn't it?

    I'm sorry.:sigh:
  • Legion
    Legion Oct 10, 2012
    Yesyesyes, I know! xD No need to strangle me with your eyes. ^^

    I mean, I knew that you bleed longer not faster. However, I was under the impression that it would keep bleeding forever until it was treated.

    And yeah, I can easily imagine why it would suck to grow up with that. :/
  • Quill Inkwell
    Quill Inkwell Oct 10, 2012
    It's okay. :smile:

    We don't really bleed forever, just...you know, longer. The other clotting factors in the blood will eventually clot the bleed, but it takes significantly less time when all of the factors are present. I don't really know exactly how much longer my bleeds last compared to a normal person (it varies from injury to injury). This is my favorite analogy that I found in a book several years ago:
    [​IMG] (I know that the image is for Factor V deficiency, but the principle is still the same.)

    I once sliced a tiny piece off the end of my finger when I worked in a spermarket deli. It bled for seven days. Every time I would change the dressing, it would start up again. I treated twice to get it to stop.

    A few years ago, I smashed my toe with a pallet jack. It bled for ten days, but I think that was mostly because I didn't have any factor on hand (I had just changed insurance companies and prescription providers and things were still getting sorted out).
  • marston
    marston Oct 10, 2012
    Ouch, dude. I sincerly hope that things will get easier for you. *hugs you*
  • Legion
    Legion Oct 10, 2012
    -facehoof-

    Of course! Why didn't I think of that?

    Makes perfect sense now that you explain it that way. :p

    Oh yeah. Also.

    -hugs!-
  • Quill Inkwell
    Quill Inkwell Oct 10, 2012
    Guys, guys! All these hugs will give me a bleed! ::S:

    But seriously, thank for the support. I means a lot to me.
  • Legion
    Legion Oct 10, 2012
    :3

    I'm glad it does. ^^
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