Answers to Your Questions about Hemophilia

What Is hemophilia?

Anyone who has ever had a cut or scrape knows that the bleeding stops sooner or later. That is because there are things in the blood, called clotting factors that make bleeding stop. A clot is what forms to stop the bleeding.

A clot is kind of like a plug. People who have hemophilia don't have enough clotting factors, so when they bleed, it doesn't stop like it should.

People can bleed inside their bodies or outside. This is true for people with hemophilia, too. When someone bleeds on the outside, from a scrape or cut, they can put a bandage on it and help stop the bleeding. Bleeding that happens inside the body can be harder to stop.

It is especially important for people with hemophilia to stop bleeding inside their bodies as quickly as possible. That's why people with hemophilia have to take special medicine, called factor, which helps stop bleeding wherever it happens.

What is an inhibitor?

Inhibitor is a pretty big word. It is also a pretty big deal to someone who has hemophilia. Inhibitors may make hemophilia harder to treat.

Everyone's body has something called an immune system. It helps keep us safe from things that don't belong inside our bodies.

Inhibitors are the body's way of trying to protect itself. When someone with hemophilia gets factor medicine, their body sometimes mistakes it for something that shouldn't be there. When that happens, the immune system sends inhibitors to fight it off.

Inhibitors make it hard for regular factor to work like it's supposed to. When someone has inhibitors, they may need to take another special medicine to stop bleeding.

Can I play sports if I have hemophilia with inhibitors?

Exercise is part of a healthy life for everyone, including someone with hemophilia and inhibitors. Exercise makes the muscles stronger. Strong muscles help prevent bleeding into joints, which can be a problem for people with inhibitors.

The National Hemophilia Foundation (NHF) developed a comprehensive listing of sports and exercises called Playing It Safe: Bleeding Disorders, Sports, and Exercise. Here are some of the kinds of exercise that might be right for you.

• Aquatics/water exercises
• Archery
• Elliptical machine
• Fishing
• Frisbee
• Golf
• Hiking
• Martial arts (tai chi)
• Sailing
• Snorkeling
• Stationary bike
• Swimming
• Walking

Here are some tips that can help you stay safe while playing sports.

• Talk with your doctor or your Hemophilia Treatment Center (HTC) first
• Always wear protective gear, such as a helmet, elbow pads and knee pads
• Keep sticks, rocks, trash, and tools away from where you are playing or exercising
• Avoid contact sports like football, hockey, boxing, and wrestling

Am I the only kid with hemophilia with inhibitors?

No! Hemophilia is pretty rare, and inhibitors are even more rare, but there are many kids like you. Since there may not be other kids with hemophilia with inhibitors who live near you, you might want to talk to your HTC or your local chapter of NHF. They can help you find one of the special groups, activities, and camps just for kids with hemophilia with inhibitors.

What is an HTC?

Hemophilia Treatment Centers (HTC) are places where doctors and nurses who know a lot about hemophilia are ready to help you. At your HTC, you can learn how to treat your bleeds with factor and how to help your joints stay healthy. You can also ask your HTC doctors and nurses about things like picking a sport and talking to teachers and friends about hemophilia.

There are HTCs all over the country. Find an HTC near you.

What is Do the 5! ?

Do the 5! is a list of 5 things you can do to help yourself live a long and healthy life. The NHF started the idea for Do the 5! At your HTC, you can get help in doing each of these important things.

1. Get an annual comprehensive checkup at a hemophilia treatment center.
2. Get vaccinated—Hepatitis A and B are preventable.
3. Treat bleeds early and adequately.
4. Exercise and maintain a healthy weight to protect your joints.
5. Get tested regularly for blood-borne infections.

Learn more about Do the 5!