Bleeding Disorders in Women Fact Sheet

The most common bleeding disorder in women and girls is von Willebrand disease, an inherited disorder that affects up to 3% of the population, or approximately 2.6 million people. Half of these people are women.

• von Willebrand disease was first recognized in 1925 by Erik von Willebrand, a Finnish physician, who described a new type of bleeding disorder in inhabitants of the Aland Islands.
• von Willebrand disease is caused by a defect in or a deficiency of a blood clotting protein called von Willebrand factor. von Willebrand disease causes bleeding into the skin and from mucous membranes, which line the nose, gums and the gastrointestinal and genitourinary tracts.
• Symptoms of von Willebrand disease include frequent or prolonged nosebleeds, easy bruising, bleeding gums, bleeding following dental work, and heavy menstrual periods.
• There is no cure for von Willebrand disease, but it can be treated. Minor bleeds may not need treatment, but more serious bleeding problems (such as very heavy menstrual periods) can be regulated by taking birth control pills or other hormones.

von Willebrand disease can only be treated if it is diagnosed. The most common presenting symptom for women with von Willebrand disease is heavy and prolonged menstrual bleeding. Although these symptoms are caused by a problem with the blood, they are frequently misdiagnosed as gynecological problems by doctors who are not hematologists. Women with von Willebrand disease who are misdiagnosed are often subjected to unnecessary procedures such as dilation and curettage (D&C) and/or hysterectomy. These procedures do not help the symptoms of von Willebrand disease and can make them worse.

According to the US Centers for Disease Control and Prevention (CDC), about 5% (approximately 28,000 women) of hysterectomies are performed for diagnosis of dysfunctional uterine bleeding. In some women, such bleeding might be caused by von Willebrand disease. Research is needed to determine the exact number of unnecessary hysterectomies related to vWD.

The National Hemophilia Foundation has many educational and informational resources for women and girls with bleeding disorders. For more information, call the National Hemophilia Foundation at 1-800-42-HANDI.