The most common, but most underdiagnosed bleeding disorder is von Willebrand disease, which affects about 1% of all people. People with von Willebrand disease have low levels of von Willebrand factor, a blood protein that is necessary for normal blood clotting. Bleeding can occur after injury and can take longer to stop bleeding than normal. Bleeding can also occur without any cause at all
The most common symptoms of von Willebrand disease include frequent nosebleeds, bruising easily, bleeding gums, prolonged bleeding after cuts or surgery (including dental work), heavy menstrual periods, and/or— in severe cases—bleeding in the stomach, intestines, muscles, or joints.
von Willebrand disease is a genetic disease, passed from parent to child. If one parent has von Willebrand disease, the child has a 50% chance of inheriting a mild form of the disease. If both parents have von Willebrand disease, the child could inherit either a mild (50% chance) or severe (25% chance) form of the disease.
Only your doctor can diagnose if you have von Willebrand disease. Since treatment depends on the type of von Willebrand disease you have, an early, accurate diagnosis is important. To help make the diagnosis, the doctor will ask you about your family medical history and your own medical history and perform a physical examination. Your doctor will also run blood tests to determine the levels of von Willebrand factor in your blood.
Treatment for von Willebrand disease is based on the type of von Willebrand disease and the severity of symptoms. The aim of therapy is to correct the clotting problem. This is usually accomplished by raising the levels of von Willebrand factor (vWF) and another protein called factor VIII in the bloodstream. Most cases of von Willebrand disease are mild, and you may need treatment only if you have surgery, tooth extraction or an accident.
There are a number of support groups available for people with bleeding disorders and their loved ones. Some of the National Hemophilia Foundation’s Chapter Centers offer support groups. You may also find a support group at a hemophilia treatment center near you.