(Please note, There are different kinds of hemophilia, Hemophilia A, and Hemophilia B. For the purpose of this editorial, I am only talking about Hemophilia A, as it is the most commonly known form of the disorder. And also because it's what I myself have, and am the most educated in. )
At A Glance Author genocia Contact [email protected] IAM genocia When N/A Location peterborough ont. canada It's three in the morning. I've just spent the last hour tossing and turning. This ankle just wont leave me alone. The swelling is getting worse, and I can't breathe because it hurts too much. I rise out of bed and fall to the floor. There's too much blood in there for me to stand properly. The pain at this point is over whelming. And it's then, and only then, that I notice the fact that my arm won't fully extend. It's begun there as well. Time to crawl to the kitchen and get a "treatment" ready.
Welcome to the life of a hemophiliac. Constant pain, swelling and medical problems that will plague me throughout my entire lifetime. Please, don't get me wrong at all. I realize fully that there are people out there, a lot worse off than I. This is not a forum for my complaints, but rather, an educational piece that will hopefully bring light to the real world of this crippling disease.
I was only a couple of months old when my parents first realized something was wrong. The doctor wanted to call Children's Aid on them because I was covered in bruises. Medical tests soon after confirmed that I had Hemophilia. There are a couple of things however, that I would like to address here. But let's start with what it is.
Hemophiliac's, or " bleeders" as we're more commonly known as, suffer from a variety of different clotting agents in the blood not working as they should, or simply not being present in the first place. The disorder most commonly effects males, though in rare cases, females have been known to get it as well. Females however are the one's known as " the carriers". The easiest way to explain how it works is as follows... in a very rare occurrence, a female can carry the hemophilia gene. She in tern passes it on to her male children causing them to be a hemophiliac. If she has a daughter, there is approximately a 50% chance that the daughter will be a carrier. Females can be Hemophiliacs if the mother is a carrier and the father has the disorder.
Most people are always under the assumption that if a Hemophiliac is cut, or hurt, that blood with fly every where at rapid speeds and they will bleed and bleed until they die on the floor in a pool of blood. This could not be further from the truth. We do not bleed more than normal people do, just for a longer period of time. In fact, it's not that we don't clot at all, because we do. The problem is that, I'm missing factor VIII, it's what tells the body to stop sending blood to a certain area. Think of it this way, when you get hurt, your body naturally sends blood to that area, because blood contains healing agents, as we all know. Normally, you would get a bruise, and mild to moderate swelling. In a hemophiliac, the body doesn't know when to stop sending blood to that area, causing extreme swelling and pain. That said, Hemophilia attacks the body more internally than externally. I, for instance, have Hemophilic Arthropathy, an arthritis caused due to constant bleeding i nto certain joints, for me, my ankle. Bleeding into joints, muscles and organs are the most common risks for the Hemophiliac.
Another huge problem for Hemophiliacs is spontaneous bleeding. Bleeds, or episodes which occur with no rational explanation. Such as the one I described at the beginning of this editorial. The ever so common night bleed, which yes, could be caused by a certain way you were lying, but is more often than not, unexplainable. These bleeds can strike at any time, causing sever Hemophiliacs to have to start prophylaxis. Something I have been on many times and isn't pretty. So what is prophylaxis, and what is the treatment for this disorder?
Until the late 1980's, the only treatment for Hemophilia was a direct blood infusion. This led to the tainted blood scandal in which many people contracted the HIV virus, and the invention of Kogenate. Kogenate is one of the only anti-hemophilic agents I'm familiar with. It is a "cryoprecipitate", which is derived from blood and contains a high concentration of clotting factors. Prophylaxis, is the regular infusion of the product used by the Hemophiliac, usually once a day, or once every other day to prevent bleeding into joints.
This disorder is rare, I am the only Hemophilia A patient in my entire city. I know this for a fact, as the hospital to which my product is delivered only receives it for me alone. If there were another patient here, they would not be alive, as Hemophiliac's rarely live out of childhood without treatment. In addition, life expectancy is ten years shorter than that of an average person. One of my biggest pet peeves of all time, is when people say "oh I think my friend has that!" or "I think I have that!" Simply put, no and, no. Trust me, if you have to think whether or not you or someone you know might have it, they don't. There's no thinking, it's a serious disorder that requires close medical supervision. That said, what was the modification process like if this is such a serious disease?
Body Modification is NOT something that should be common practice for people with this disorder. It is unpredictable how the body will react. This is the first and foremost reason as to why I could never do suspension. I have always been intrigued with being able to take that kind of physical journey, and am more and more disappointed with each year that passes. I know my own risks and I realize that doing something this extreme would more than likely take my life.
When I got my first labret, my first ever piercing, I was fine. There was little to no blood, in fact quite normal. However, when I awoke the next morning my lip was quite swollen. It remained that way for several days until it finally went away. I was so frightened that it would reject and I'd have to take it out. But fortunately I was able to keep my bleeding under control after that with constant prophylaxis.
Hemophilia also played a huge roll in the reason that my wrists did not turn out. I was constantly getting bleeds into my arms at the time, and the constant swelling was not allowing them to heal properly. I was greatly disappointed and had them re-done several times with the same luck.
As far as getting tattoo's, if I do not infuse myself before hand, it can be quite serious. My tribal piece on my left arm lost some ink because even though I had taken my needle, it still would not stop bleeding. The unpredictable nature of this disorder makes it extremely difficult to get modified. For any other Hemophiliac out there wondering how to get even the most simple piercing or anyone interested in the process... this is it.
First and foremost, you should go to the place where your mod will be done and have a talk with the piercing/tattoo artist about your disorder. Tell them any risks you may have well before your actual body mod is even done. Inform them that there is a slight risk that you may have Hep C or B and possibly even the HIV virus. Even though this is extremely rare and I do not personally have these myself, it is very important to inform the person working on you of their risks as well. Once this is done, talk to them about a specific time and date to get your mod done. About a half hour before the actual mod you should infuse yourself with your product. This gives it time to set in before your big moment. When you arrive at your appointment you should remind the artist of all their risks again, and inform them that you are now safe because you have self infused and are ready to rock! The mod should go off without a hitch, however as I said, hemophilia is very unpredictable. So I strongly advise you to BE CAREFUL and you use your own discretion as to what you feel safe doing.
You should also not feel bad if an artist decides to reject you. It is their decision in the end and besides, do you really want someone working on you that does not feel comfortable doing so? Because I know that I wouldn't. I was lucky enough however, to find the right people to do my mods off the bat. I have talked to them extensively about my disorder and they know what to expect now and look out for me more so than I do myself.
So I must be pretty dumb to be a modified Hemophiliac, right? Well, to tell you the truth, I never quite know how to respond to that whole idea of "stupidity". To me, Hemophilia effects the body, not my mind. I know what I want, I know my risks and I have educated myself thoroughly in the procedures used, and what I have to do to be safe. I take my needle before and after the piercing or tattoo to prevent any extra swelling or bleeding that may occur. For me, this is a way of controlling my own pain, where I never have been able to before. I'm 21 now, I may have another 40 or 50 years left, I'd hate myself if I didn't live it the way I wanted to.
I hope this has taught you something. Though I realize that I could have gone into a lot more detail about a lot of things, I also know what kind of time that would consume on both you the reader and myself. This was not meant to tell you everything there is to know, it is but a brief overview to educate you in this commonly misunderstood disorder.
~Genocia
( For further reading, comments or questions, drop me a line. )