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Factor IX Deficiency - Hemophilia B


Prevention & Expectations

What can be done to prevent the disease?

Hemophilia B is a genetic disease. The disease cannot be prevented in a person who is born with this gene. Genetic screening can tell individuals if they are carriers of the disease. Since hemophilia B is a treatable disease, genetic counseling before or during pregnancy can be helpful to couples with a family history of the disease.

An unborn fetus can also be tested for hemophilia. The testing can be done as early as the first trimester, with chorionic villi sampling or amniocentesis. These tests carry a small risk of causing a miscarriage.

What are the long-term effects of the disease?

Long term effects of hemophilia B are usually only seen with moderate to severe disease. Possibilities include:

  • anemia, or shortage of red blood cells
  • bleeding into the brain, resulting in strokes and mental disabilities
  • damage from bleeding. This includes joint deformity, arthritis, and muscle stiffness.
  • abnormal iron deposits in the liver and other organs, which may cause damage
  • What are the risks to others?

    This is not a contagious disease. Someone with hemophilia or a family history of hemophilia may find genetic counseling helpful. This will determine the risk of passing on the abnormal gene to the children or grandchildren.


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