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An Introduction to von Willebrand disease

What is von Willebrand disease?

Von Willebrand disease (VWD) is the most common bleeding disorder that people have.

There are various types of VWD. (See Types of Von Willebrand Disease.) All the different types are caused by a problem with the von Willebrand factor (VWF). This is a protein in blood which is necessary for proper blood coagulation, or clotting.

When there is not enough VWF in the blood, or when it does not work the way it should, the blood takes longer to clot.

How does blood clot normally?

Blood is carried throughout the body within a network of blood vessels. When tissues are injured, damage to a blood vessel may result in leakage of blood through holes in the vessel wall. The vessels can break near the surface, as in a cut. Or they can break deep inside the body, making a bruise or an internal hemorrhage.

When a blood vessel is damaged, there are four stages in the normal formation of a clot. See Figure 1.

How does VWD affect the normal clotting of blood?

Von Willebrand disease affects the last three stages in the blood clotting process. See Figure 2.

How common is von Willebrand disease?

Doctors now think that VWD could affect as many as 1 in 100 people, or 300,000 Canadians. Because many of these people have only very mild symptoms, only a small number of them know they have the disease. Research has shown that as many as 9 out of 10 people with von Willebrand disease have not been diagnosed.

Who can have von Willebrand disease?

Von Willebrand disease affects both men and women. However, because VWD can cause heavy menstrual bleeding and prolonged bleeding after childbirth, more women than men have noticeable symptoms.

Children, too, can have VWD. They are born with it. This is because VWD is a hereditary disorder.

Can VWD be passed from parents to children?

Yes. If one or both of the parents have VWD, they can pass it on to their children. (See Heredity of von Willebrand disease.)

Why is it called von Willebrand disease?

It is named after the Finnish physician, Erik von Willebrand, who first described the condition in 1925. He realized that the disease was different from hemophilia, another important bleeding disorder, which mainly affects males.

How serious is von Willebrand disease?

It depends on the type of disease. Most people have such mild cases that they never know they have the disease. Others only realize they have a bleeding problem after a serious accident or surgery. Some people with VWD bleed quite frequently.

Is there a cure?

No, there isn’t. It is a lifelong, most often mild, condition.  Fortunately, there are safe, effective treatments for all types of VWD.