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Hemophilia
Foundation of Washington |
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About Hemophilia |
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Willebrand Disease
What is
Hemophilia?
Hemophilia is a hereditary disorder, which causes blood to clot more slowly (or not at all). The disease is caused by the inactivity of one of the blood proteins necessary for clotting.
A hemophiliac does not bleed faster than anyone else, but he/she may bleed longer. Contrary to common belief, hemophiliacs do not bleed to death from minor external wounds. Minor cuts are easily treated, just as in the non-hemophiliac. The major danger for the hemophiliac is uncontrolled internal bleeding, which can begin spontaneously without apparent cause. If internal bleeding is not stopped quickly, it will cause pain and swelling. Over time, bleeding into joints and muscles can cause permanent damage and chronic pain.
Hemophilia includes Hemophilia A (Factor VIII deficiency), and Hemophilia B (Factor IX deficiency). Von Willebrand's disease (which also affects females) and other rare clotting disorders have similar symptoms, but are not usually considered to be hemophilia. Nonetheless, the Hemophilia Foundation of Washington includes them in its purposes and programs.
Who
gets Hemophilia?
Hemophilia is a genetic disease. In most cases, there is a family history of hemophilia; however, up to 1/3 of the cases occur in families with no history of hemophilia.
Women with apparently normal clotting ability may pass hemophilia on to their sons. Their daughters may carry the gene for hemophilia, but rarely have the disease. A man with hemophilia cannot pass the disease on to his sons. However, all of his daughters will carry the gene, and they may pass hemophilia on to their children.
Hemophilia affects people of all races, nationalities, and economic levels. At least 20,000 males in the United States have hemophilia. This number does not include the many mild cases, which are not diagnosed until after a major injury or surgery.
How is
Hemophilia Treated?
Medical advances made in the 1960's have greatly improved the ability to manage hemophilia. In 1965, a process for removing the clotting factor from whole blood and then freezing it for future use was developed. Frozen clotting factor and a powdered concentrate developed commercially has made treating hemophilia fairly routine. Recently, synthetic, mass-produced factor has become available to hemophiliacs. The availability of the many types of factor has also made possible surgical procedures previously considered too risky. With infusions of clotting factor, often at home, hemophiliacs can lead a fairly normal, self-sufficient life.
Treating hemophilia however is extremely expensive. Because hemophiliacs have a near normal lifespan, they must bear the costs for a lifetime. Although medical expenses vary from person to person, the average cost is about $40,000 a year. Sometimes complications of hemophilia can cause annual medical expenses to exceed $100,000. The factor needed to treat hemophilia has a per unit cost and the number of units necessary are dependent on the weight of the patient.
We hope that continued research would discover a less expensive way to produce clotting factor. In addition, research must continue toward the eventual cure and elimination of hemophilia.
HFW Home Page | About Us
| Upcoming
Events and News
Newsletters | Camp I-VY | About Hemophilia | About Von
Willebrand Disease