Your heart might sink at the thought of having to explain hemophilia and inhibitors to someone yet again. Or maybe not? Perhaps you have an explanation down pat?
If so, that's cool. If not, here are some of the questions you may be asked, and some suggestions for answers. You might want to read them and memorize them. Or, if you want, just send your friends a link to this page so they can read the answers themselves.
What Does Having Hemophilia Mean?
Answer: A lot of people think having hemophilia means you'll bleed to death if you get a cut, but that's silly. It's really not like that at all. Yes, it takes longer to stop bleeding, because my blood doesn't clot like yours does. But, I take treatment to stop bleeds when I need to.
So don't worry, if I get a paper cut, it's highly unlikely I'll bleed to death. And, no, hemophilia’s not contagious. You can't catch it from me.
What Are Your Health Risks?
Answer: Internal bleeding is the main thing I have to worry about. Sometimes this happens spontaneously (without a known cause).
If I do get a spontaneous bleed, it's usually in one of my joints, like my ankle, knee, or elbow. Then the joint will be painful, swell up, and look very bruised.
What if You Have a Head Injury?
Answer: The biggest emergency would be if I started to bleed inside my head — either because of a spontaneous bleed, a knock to the head, or a fall.
So, if I start acting strange and there is no good explanation, or if I lose consciousness or injure my head in any way, you need to get help— I might need immediate medical attention.
It will probably never happen.
But, if it does, make sure to tell the medical team that I am a hemophiliac with inhibitors!
What Does 'Having Inhibitors' Mean?
Answer: It is common for people with hemophilia to get immune to their treatment. Inhibitors are antibodies that attack whenever I use a regular hemophilia treatment.
In my case, I can't use the normal hemophilia treatment because my body rejects it. It just doesn't work. So, it can be harder to stop a bleed. That's why I try to be a little more careful, and protect myself from bleeds.
So, basically what I'm saying is:
- I try and avoid injuries and knocks or bumps because they can be more serious for me than other people
- I take treatment to protect myself from bleeds or to stop a bleed when I get one
- Because I have inhibitors, it is even more urgent to treat a bleed as soon as it happens
- Because I have inhibitors, I need a different treatment from other people with hemophilia