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Von Willebrand disease (VWD) is a bleeding disorder. It affects your blood's ability to clot. If your blood doesn't clot, you can have heavy, hard-to-stop bleeding after an injury. The bleeding can damage your internal organs or even cause death, although this is rare.
In VWD, you either have low levels of a certain protein in your blood, or the protein doesn't work the way it should. The protein is called von Willebrand factor, and it helps the blood clot.
Normally, when one of your blood vessels is injured, you start to bleed. Small blood cell fragments called platelets clump together to plug the hole in the blood vessel and stop the bleeding. Von Willebrand factor acts like glue to help the platelets stick together and form a blood clot.
Von Willebrand factor also carries clotting factor VIII, another important protein that helps your blood clot. Factor VIII is the protein that's inactive or missing in people who have hemophilia, another clotting disorder.
VWD is more common and usually milder than hemophilia. In fact, VWD is the most common of all the inherited bleeding disorders. It occurs in about 1 out of every 100 to 1,000 people. VWD affects both males and females, while hemophilia mainly affects males.
There are three major types of VWD.
Von Willebrand disease is almost always inherited. You can inherit type 1 or type 2 VWD if only one of your parents passes the gene on to you. You usually inherit type 3 VWD only if both of your parents pass the gene on to you. Your symptoms may be different from your parents' symptoms.
Some people have the genes for the disorder but don't have symptoms. However, they still can pass the genes on to their children.
The signs and symptoms of von Willebrand disease depend on the type and severity of the disorder. Many people have such mild symptoms that they don't know they have the disorder.
If you have type 1 or type 2 VWD, you may have the following mild-to-moderate bleeding symptoms:
People who have type 3 VWD may have all of the symptoms listed above, as well as severe bleeding episodes for no reason. These bleeding episodes can be fatal if not treated right away. People who have type 3 VWD also may have bleeding into soft tissues or joints, causing severe pain and swelling.
Heavy menstrual bleeding is often the main symptom of VWD in women. Doctors call this menorrhagia. They define it as:
However, just because a woman has heavy menstrual bleeding doesn't mean she has VWD.
No single test can diagnose VWD. Your doctor may recommend a combination of blood tests to diagnose the disorder. These tests may include: