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Frequently asked questions

What is VWD?

VWD is the most common type of bleeding disorder. People with VWD have a problem with a protein in their blood called von Willebrand factor (VWF) that helps control bleeding. When a blood vessel is injured and bleeding occurs, VWF helps cells in the blood, called platelets, mesh together and form a clot to stop the bleeding. People with VWD do not have enough VWF, or it does not work the way it should. It takes longer for blood to clot and for bleeding to stop.

How was VWD discovered?

In 1926, Dr. Erik von Willebrand, a Finnish physician, published the first description of an inherited bleeding disorder that was different from haemophilia. Dr. von Willebrand’s studies into this new disease began with a family living on the island of Föglö in the Åland archipelago in the Baltic Sea. One of the women (the first known sufferer of VWD) in this family bled to death in her teens from menstrual bleeding, and four other family members had also died before her as a result of uncontrolled bleeding.

How common is VWD?

It is estimated that up to 1% of the world’s population suffers from VWD, but because many people have only very mild symptoms, only a small number of them know they have it. Research has shown that as many as 9 out of 10 people with VWD have not been diagnosed.

How do you get VWD?

VWD is usually inherited. It is passed down through the genes from either parent to a child of either sex.  Occasionally, VWD occurs due to a spontaneous change in the VWD gene before the baby is born.

Will a woman with VWD necessarily pass the disease on to her child? What if the father has VWD?

A woman with VWD has a 50% chance of passing the disease on to her child. If the father has VWD, the child still has a 50% chance of inheriting the disease.

What is the difference between haemophilia and VWD?

VWD and haemophilia are different types of bleeding disorders. VWD is caused by a problem with von Willebrand factor, whereas haemophilia is caused by a problem with another type of clotting factor (factor VIII in haemophilia A; factor IX in haemophilia B). Though both disorders are usually inherited, the inheritance pattern (the way the genes are passed down from parent to child) is different. Symptoms of VWD are usually milder than symptoms of haemophilia, but serious bleeding episodes can occur in either condition.

How serious is VWD?

The severity of symptoms depends partly on the type of VWD a person has. Types 1 and 2 are generally mild, but people with Type 3 VWD can have very serious bleeding episodes. Even within each type of VWD, though, symptoms can be quite variable.

Do women with VWD have more serious symptoms than men?

More women than men show symptoms of VWD because of menstruation and childbirth. Women with VWD often bleed more or longer than normal with their monthly periods. However, men can also have serious symptoms, especially those with Type 3 VWD.

Do all women with heavy menstrual bleeding have VWD?

No. There are many possible reasons for heavy menstrual bleeding (menorrhagia) besides VWD. However, one British study showed that one out of every five women who went to the doctor because of heavy or prolonged bleeding actually had a bleeding disorder.

How is VWD diagnosed?

VWD is diagnosed through a series of blood tests that should be performed by specialists at a bleeding disorder treatment centre. Several different tests need to be done in order to determine the exact type of VWD a person has.

The diagnosis of VWD is difficult. Research has shown that as many as 9 out of 10 people with VWD have not been diagnosed.

Can women with VWD get pregnant?

Yes. Most women with VWD have no problem conceiving. Women with VWD should consult an obstetrician as soon as they learn they are pregnant. The obstetrician will work with the bleeding disorders treatment centre to provide the best care during the pregnancy and childbirth.

Are women with VWD at greater risk of having a miscarriage?

Women with Type 3 VWD seem to have more frequent miscarriages, especially in the first trimester of pregnancy. However, it is possible that these miscarriages are simply more noticeable in women with VWD, because there is more bleeding. Bleeding after miscarriage can also be more severe for women with VWD.

Should people with VWD get vaccinated?

Yes. The hepatitis B vaccine is recommended for all people who routinely receive blood or blood products, even though the risk of transmission is very small. People with VWD, especially those who also have hepatitis C, should also get vaccinated against hepatitis A. In very rare cases, hepatitis A has also been transmitted by blood products.

Is there a cure for VWD?

No, there is no cure for VWD. It is a lifelong condition, but there are safe, effective treatments for all types of VWD.