Hemophilia is an inherited bleeding disorder, which means it can run in families. Blood does not clot properly in people with hemophilia. Blood contains proteins called clotting factors that are needed to stop bleeding. People with hemophilia have low amounts of either factor VIII (factor 8) or factor IX (factor 9) in their blood. A lower amount of factor in the blood typically leads to more severe hemophilia. The lower the amount of the factor, the more likely it is that bleeding will occur. Hemophilia occurs in about 1 of every 5,000 male births from all racial and ethnic groups. Females can also have hemophilia, but this is much more rare.
- Hemophilia can lead to spontaneous bleeding as well as bleeding following injuries or surgery.
- People with hemophilia have low amounts of proteins called clotting factors that are needed to stop bleeding.
- Hemophilia is typically treated by infusing (giving through a vein) the missing clotting factor in order to stop bleeding.
- Males with hemophilia usually have bleeding episodes, but females might also experience bleeding related complications.
- People with hemophilia can live normal lives, but should avoid activities that put them at risk for injury or trauma.
- Some people with hemophilia will develop inhibitors. Inhibitors make it more difficult to stop a bleeding episode because they prevent the treatment from working.
People with hemophilia can have bleeding within joints that might lead to long-standing joint disease and pain, most commonly in the knees, ankles, and elbows. Bleeding might also occur in the head or brain, which can cause long term problems, such as seizures and paralysis, and in rare cases, can cause death.
People with hemophilia receive treatment products containing their missing clotting factor. Some people’s immune systems do not accept the treatment factor, and will make inhibitors (antibodies to factor) to destroy the factor. Inhibitors make it more difficult for factor to stop bleeding episodes, thus increasing the risk of complications.
- Hemophilia is a hereditary (inherited) disorder, which means it can be passed down in families. Any family history of bleeding, such as following surgery or injury, or unexplained deaths, should be discussed with a doctor.
- Good quality medical care from doctors and nurses who are knowledgeable about hemophilia can help prevent some serious problems. Often the best choice is a hemophilia treatment center, which provides care for all issues related to the disorder.
- About 1 in 5 people with hemophilia develop an inhibitor. Inhibitors make it less likely that clotting factor treatment will stop bleeding. It’s important for people with hemophilia to get tested yearly for inhibitors in order to detect them early.
- Everyone should exercise regularly to stay healthy. People with hemophilia should avoid high-impact sports. For more information people with hemophilia should talk with a doctor or visit a hemophilia treatment center.