Be Inspired on This Year's World Hemophilia Day

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Today, April 17, is World Hemophilia Day. It is a day intended to increase understanding of hemophilia and other inherited bleeding disorders. This year’s theme is "Be Inspired, Get Involved in Treatment for All".

The World Federation of Hemophilia is sharing inspiring stories of people with bleeding disorders and healthcare professionals who are committed to improving their own lives and the lives of all those with bleeding disorders.

The WFH invites you to share your own story by visiting their website during the month of April. Those who do so are eligible to win a digital camera.

Hemophilia is an inherited bleeding disorder in which the blood does not clot properly. Hemophilia is quite rare. About 1 in 10,000 people is born with hemophilia A. About 1 in 50,000 people is born with hemophilia B. About 400 babies are born with hemophilia each year in the United States.

Hemophilia, von Willebrand disease, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or it does not work properly.

The severity of hemophilia is determined by the level of clotting activity of factor VIII or factor IX in the blood. There are three levels of severity: mild, moderate, and severe.

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The major signs of hemophilia are bleeding that is unusually heavy or lasts a long time, or bleeding and bruising that happens without obvious cause. The amount of bleeding depends on the type and severity of hemophilia and how serious it is.

Bleeding may occur in the joints which can cause swelling and pain or tightness. The joints most often affected include the knees, elbows, and ankles.

Bleeding may occur in the skin (bruising) or muscle and soft tissue (a hematoma). It may also occur in the mouth and gums.

People with hemophilia should not take aspirin (ASA or acetylsalicyclic acid), or anything containing aspirin, because it interferes with the stickiness of the blood platelets and adds to problems with bleeding. Tylenol or acetaminophen can be taken.

Sports and exercise is an important activity for young people. It helps build their muscles and bones, prevents obesity, and is good for the heart. However, some sports are riskier than others, and the benefits must be weighed against the risks for anyone with a bleeding disorder. Sports like swimming, badminton, cycling, and walking are sports that most people with hemophilia can safely participate in.

Learn more about hemophilia by visiting the WFH or CDC websites. Be inspired by reading this profiles shared by the WFH.

Source
World Federation of Hemophilia
Centers for Disease Control and Prevention

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