What Is Hemophilia?

Hemophilia is a rare bleeding disorder that affects how the blood clots. People with hemophilia have low levels of specific proteins, called clotting factors. Hemophilia primarily affects males but can impact females as well.

Every year, about 400 babies are born with hemophilia in the US. Currently, there are currently around 32,000 people in the US who are living with hemophilia. There are two main types of hemophilia:

• Hemophilia A accounts for about 80% of cases and is caused by low levels of Factor VII.
• Hemophilia B accounts for about 20% of cases and is caused by low levels of Factor IX.

Hemophilia is classified as either mild, moderate, or severe. This classification depends on the amount of clotting factor a person has in their body. The most common type of hemophilia is severe. Women are less likely to have hemophilia. But they can still carry the gene for it and may experience symptoms. In fact, up to 20% of people with mild hemophilia are women. 

People with hemophilia do not bleed faster than others, they bleed longer. People with hemophilia may experience bleeding inside the body, which can be a serious problem. Bleeding into joints like the knees, elbows, and ankles can be very painful and cause swelling. Repeated bleeding into a joint can cause permanent damage. Bleeding inside other parts of the body, such as the brain, throat, and abdomen can be life-threatening. Small cuts and scrapes are usually not a problem for someone with hemophilia. They can hold pressure on the cut and platelets in the blood will stop the bleeding.

Currently, there is no cure for hemophilia, but there are medications that people can take to help prevent and control bleeding. Gene therapy is approved by the FDA for hemophilia A and B. Gene therapy is not a cure but can reduce the need for prophylaxis for periods of time. The focus in hemophilia management is on factor replacement or factor mimicking. These medicines help prevent bleeding so people with hemophilia can do most things everyone else does. By using these medicines and visiting a doctor at a hemophilia treatment center regularly, a person with hemophilia can expect to live a long and healthy life. 

The medications used to treat hemophilia can be costly. Hemophilia of Georgia recognizes how the high cost of treating bleeding disorders can impact a family financially. Our staff is here to help patients with insurance and billing issues. In addition, we help them understand and manage their insurance benefits. 

Learn more about hemophilia and other bleeding disorders in The Hemophilia, von Willebrand Disease & Platelet Disorders Handbook, a free online resource for everyone in the bleeding disorder community.