Mr Spinkles
Mr
Most people (even doctors) know very little about hemophilia. Since I tend to get asked the same questions a lot by curious folk, I decided to write this FAQ to answer any questions you, the good people of religiousforums.com, may have.
Frequently Asked Questions about Hemophilia:
1) Is homophilia that thing where you don't have any white blood cells?
It's "hemophilia", and no.
2) Sorry. What is hemophobia?
It's "hemophilia", and it's a genetic blood-clotting disorder in which the DNA of the hemophiliac is missing information that tells the liver to produce certain proteins in the blood which aid in the clotting process.
3) So, if you get a paper cut will you die?
Yes.
4) Really?
No. If I get a paper cut, it will bleed longer than most people, but it still won't bleed for very long.
5) What if your arm gets hacked off or something? Say, by a thresher?
Call 911 and put that thing on ice, fast!
6) Is it contageous?
You should have thought about that before you borrowed my toothbrush.
7) What's that thing on your arm?
It's a Medic Alert bracelet. If the paramedics had to rescue me for something, they could read on the bracelet that I am have severe hemophilia with factor 9 defficiency and get the appropriate treatment.
8) Do you take medicine?
Yes. My medicine is a protein concentrate which I mix with sterile water in a syringe and inject intraveinously.
9) You have to give yourself a shot?!? How often?
It depends on the treatment plan. Usually I do it twice a week preventatively, with additional treatments if I am injured. However, sometimes I have long periods where I don't have any problems, so I stop the preventative treatment and only use the medicine as needed.
10) Does it hurt?
Not really. It's not even as painful as a bee sting. The needles are those small, colored butterfly needles they use in hospitals to draw blood.
11) So, does that cure you?
No. Normal factor levels are between 50-150%. The factor levels in my blood are less than 1%. After a treatment of one dose of my medicine, it brings me up to somewhere around 15%, with a 24 hour half-life (meaning the next day, I'm down to about 7.5% and so on). The medicine helps a lot, but only a ridiculously large, unaffordable and impractical amount would bring me into the normal range, and even then only temporarily. If I get a bleed, the factor I take helps a lot.
12) What is a "bleed"?
Good question! Think of a bruise--a bruise is just an internal pocket of bleeding very close to the surface of the skin. A "bleed" in hemophilia terms is any acute internal bleeding--this can occur in the muscles, joints, and so forth. Some hemophiliacs get so many bleeds in certain joints that they lose their mobility in those joints permanently. A bleed can be caused by trauma to an area or stress on a joint. Some hemophiliacs can even get "spontaneous bleeds" which appear for no apparent reason.
13) Will your children have hemophilia?
None of my children will have the disorder themselves. However, all of my daughters will be 'carriers' of the hemophilia gene and may pass it on to their offspring. Fortunately, since only males will carry on the family name, hemophilia won't appear in my family line anymore. Meanwhile, my daughters will go out into the world and 'infect' other families with the disorder. It's called survival of the fittest, bwahahaha!
14) What is your favorite Simpsons episode?
This has nothing to do with hemophilia, but since you asked, the one where Homer quits his job and moves the family to a lucrative neighborhood to work for Hank Scorpio--a James Bond-style archvillian bent on world domination.
Feel free to ask me anything about hemophilia or just comment about it. I'll answer any questions as best I can.
Frequently Asked Questions about Hemophilia:
1) Is homophilia that thing where you don't have any white blood cells?
It's "hemophilia", and no.
2) Sorry. What is hemophobia?
It's "hemophilia", and it's a genetic blood-clotting disorder in which the DNA of the hemophiliac is missing information that tells the liver to produce certain proteins in the blood which aid in the clotting process.
3) So, if you get a paper cut will you die?
Yes.
4) Really?
No. If I get a paper cut, it will bleed longer than most people, but it still won't bleed for very long.
5) What if your arm gets hacked off or something? Say, by a thresher?
Call 911 and put that thing on ice, fast!
6) Is it contageous?
You should have thought about that before you borrowed my toothbrush.
7) What's that thing on your arm?
It's a Medic Alert bracelet. If the paramedics had to rescue me for something, they could read on the bracelet that I am have severe hemophilia with factor 9 defficiency and get the appropriate treatment.
8) Do you take medicine?
Yes. My medicine is a protein concentrate which I mix with sterile water in a syringe and inject intraveinously.
9) You have to give yourself a shot?!? How often?
It depends on the treatment plan. Usually I do it twice a week preventatively, with additional treatments if I am injured. However, sometimes I have long periods where I don't have any problems, so I stop the preventative treatment and only use the medicine as needed.
10) Does it hurt?
Not really. It's not even as painful as a bee sting. The needles are those small, colored butterfly needles they use in hospitals to draw blood.
11) So, does that cure you?
No. Normal factor levels are between 50-150%. The factor levels in my blood are less than 1%. After a treatment of one dose of my medicine, it brings me up to somewhere around 15%, with a 24 hour half-life (meaning the next day, I'm down to about 7.5% and so on). The medicine helps a lot, but only a ridiculously large, unaffordable and impractical amount would bring me into the normal range, and even then only temporarily. If I get a bleed, the factor I take helps a lot.
12) What is a "bleed"?
Good question! Think of a bruise--a bruise is just an internal pocket of bleeding very close to the surface of the skin. A "bleed" in hemophilia terms is any acute internal bleeding--this can occur in the muscles, joints, and so forth. Some hemophiliacs get so many bleeds in certain joints that they lose their mobility in those joints permanently. A bleed can be caused by trauma to an area or stress on a joint. Some hemophiliacs can even get "spontaneous bleeds" which appear for no apparent reason.
13) Will your children have hemophilia?
None of my children will have the disorder themselves. However, all of my daughters will be 'carriers' of the hemophilia gene and may pass it on to their offspring. Fortunately, since only males will carry on the family name, hemophilia won't appear in my family line anymore. Meanwhile, my daughters will go out into the world and 'infect' other families with the disorder. It's called survival of the fittest, bwahahaha!
14) What is your favorite Simpsons episode?
This has nothing to do with hemophilia, but since you asked, the one where Homer quits his job and moves the family to a lucrative neighborhood to work for Hank Scorpio--a James Bond-style archvillian bent on world domination.
Feel free to ask me anything about hemophilia or just comment about it. I'll answer any questions as best I can.
