Dealing with School
You've probably had tons of questions from curious (nosey!) friends and adults over the years. You probably can't even believe how dumb some of them have been.
Sometimes, you probably get tired of everyone asking questions and wish they would just leave you alone.
But, You're Fascinating!
Hemophilia is a rare disease and developing an inhibitor is even rarer.
This means that very few people will ever meet someone with hemophilia … let alone know much about it. So you can't blame them too much for not knowing (and asking questions).
After all, you've lived with the condition your whole life. You know a lot about it. In fact, you're pretty much an expert by now, right?
Anyway, it might help if you have an explanation ready about hemophilia and inhibitors. Then you'll be ready for those questions when they come.
Really, there are only 3 main things people should know. You can memorize them and recite them — or copy and paste them into an email:
Hemophilia. It's not contagious. It's passed down through families. It means that if I cut myself, my blood can't clot as it should. I can have a bleed on the inside even if I just fall or bump into something. And, while people have this idea of people with hemophilia bleeding to death, it doesn't mean I'm going to bleed all over the place if I get a paper cut. It just means I need to take medicine (called a clotting factor) to stop the bleeding.
Inhibitors. Most people produce substances in their body, called clotting factors, to help their blood make clots. So, people with hemophilia take clotting factor medication in order to stop bleeding. But, the thing is, there are these things made by the immune system called antibodies — they are a bit like tiny soldiers in their blood. They attack things like viruses, that the immune system sees as an enemy. But, my body gets confused and thinks the clotting factor medicine is an enemy, so it attacks that, too. So, since the medicine for hemophilia doesn't work anymore, I take something else instead. It means that if I get a bleed, it's harder to stop.
On-demand. This means I take treatment after a bleed has started.
Most people don't need to know more than that. It's too bad no one makes T-shirts with these answers printed on them. (Maybe you should?)
On the other hand, if you're seeing a dentist, physical therapist, or new doctor, it's important that they understand your situation completely. So, if they have questions that you don't know the answer to, you might need to get them to talk to your doctor or someone on your hemophilia care team, like a Head Nurse.
Always keep your doctor's and hemophilia care team's telephone numbers or email addresses on hand. That way, you can give them to anyone who needs more information. Your hemophilia care team should also be able to give you some leaflets to hand out that explain the condition. If not, check out our page on Telling Friends and print it out for people who need more information.
Fear of the Unknown: Why Bullying Can Happen and Where to Turn if It Does
Bullies are actually cowards (even if it doesn't seem like it sometimes). They pick on people who they think are easy targets. That generally means someone who is a little different from everyone else and stands out from the crowd.
Bullies usually back off when you stand up to them. But, when you have a condition like hemophilia with inhibitors, it means standing up to them with words and wit. It's not worth taking any physical risks.
Remember, bullying can happen to anyone. It's really important not to keep it to yourself. Tell a friend, a teacher, your parents, or someone else you trust.
There's also plenty of information available on the web. If you need advice, try doing a web search on "dealing with bullies" and similar topics.