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Hemophilia is a rare inherited bleeding disorder.
About 400 babies are born with hemophilia each year in the United States. Hemophilia almost always occurs in males.
A baby born with hemophilia has a problem with certain proteins in the blood, called clotting factors, which help blood clot. Hemophilia can be due to a low level of one of these clotting factors or due to a clotting factor that is completely missing.
When clotting factors are missing, or your body does not have enough of these factors, it can take a long time for your blood to clot after an injury or accident. Bleeding often occurs internally.
There are two main types of hemophilia: A and B. People with hemophilia A have low levels of clotting factor 8 or are missing it altogether. People with hemophilia B have low levels of clotting factor 9 or are missing it altogether.
Hemophilia is caused by a defect in one of the genes that determine how the body makes certain blood-clotting factors. The genes are located on the X chromosomes, which determine if a baby is a boy or girl.
The major signs and symptoms of hemophilia are bleeding and bruising. The extent depends on the type and severity of the disease.
Bleeding often occurs internally, such as in joints and muscles. If bleeding in the brain occurs, it is a medical emergency.
To diagnose hemophilia, your doctor will take a personal and family history, do a physical examination, and order blood tests. The tests will show if you have a bleeding problem, if it is due to hemophilia or another cause, and how severe the disorder is.
The main treatment for hemophilia is injecting the low or missing clotting factors directly into the bloodstream. This is called "replacement therapy."
Replacement therapy sometimes can be given on a long-term basis to prevent bleeding. Those with severe hemophilia are more likely to receive this type of preventive replacement therapy.
Replacement therapy can be given on demand (as needed) to stop bleeding when it occurs. This therapy is more common in those with milder hemophilia.
Early treatment for bleeding is important to prevent or limit damage to joints, muscles, or other parts of the body.
Replacement therapy is often done at home. Home treatment has many benefits, but it is important to be trained to do home infusions properly and safely.
Exercise is important for children and adults. Talk with your doctor about the type of exercise that is best for you or for your child and what to do to prevent injuries.
If you have or your child has hemophilia, learn as much as you can about the disorder. If possible, join a support group.
Hemophilia Treatment Centers are located in many areas of the United States. These centers can provide treatment, education, and support to hemophilia patients, their families, and their health care providers.
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