What is von Willebrand disease?

Von Willebrand disease (VWD, also called von Willebrand disorder) is the most common genetic bleeding disorder you can inherit from your parents. VWD is similar to haemophilia, but more common and usually less severe.

One of the proteins in your blood that helps to control bleeding is called von Willebrand factor (VWF). If you have VWD either you will not have enough of this protein, or it will not work properly.

This means that it takes longer than normal for your blood to clot and for bleeding to stop.

Types of von Willebrand disease

There are 3 types of VWD:

• Type 1 (most common type) — VWF works normally but you do not have enough of it.
• Type 2 — VWF does not work properly.
• Type 3 (rarest type) — you have very little or no VWF in your blood.

What are the symptoms of von Willebrand disease?

The most common VWD symptoms are:

• bruising easily
• very heavy or long menstrual periods
• prolonged and excessive bleeding after a cut, injury, surgery, childbirth or dental work
• frequent or long-lasting nosebleeds
• gum bleeds

Older people might have rarer symptoms of blood in their urine or stools.

If you have severe VWD you may have:

• bleeding into your joints and muscles causing swelling and pain
• spontaneous bleeding episodes for no obvious reason

If you have VWD, your symptoms may change throughout your life.

Many people who have VWD do not have symptoms.

How is von Willebrand diagnosed?

A specialist doctor (haematologist) can diagnose you with VWD by doing special blood tests.

They may refer you to do these blood tests if you and/or your family have a history of easily bruising or bleeding.

VWD can be hard to diagnose. Sometimes you’ll need to repeat some specialised blood tests because your VWF levels can vary. These tests can also check the type of VWD you have.

Some people are only diagnosed if they have major bleeding from a surgery or injury.

If you have severe VWD it is likely you were diagnosed when you were a baby or young child.

How is von Willebrand disease treated?

Your treatment for VWD depends on the type of VWD you have and how severe it is.

Your treatment may include:

• medicines or injections to help your blood clot properly
• treatments to help wounds stop bleeding
• hormones to trigger the production of VWF in your blood

If you have mild VWD, you may only need treatment if you have surgery, dental work or are bleeding from an injury.

Some minor bleeding can be managed at home, while more serious bleeding may need expert medical help.

Resources and support

Support for people with bleeding disorders (including VWD) and their families is available from the Haemophilia Foundation Australia website.

can provide support and advocacy for people living with rare diseases like VWD.

Visit healthdirect's genetic disorders guide to learn more about genes, types of genetic disorders and where to go for help and more information.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available 24 hours a day, 7 days a week.

If you think your child may have a bleeding disorder, call Pregnancy, Birth and Baby to speak to a maternal child health nurse on 1800 882 436 or video call. Available from 7 am to midnight (AET), 7 days a week (including public holidays).