What is von Willebrand disease (VWD)?

It is a bleeding disorder that is similar to hemophilia. VWD is more common than hemophilia and not as serious. The von Willebrand factor is a protein that helps your blood clot. It does not work normally in people with VWD.

There are three major types of VWD. Types 1 and 2 are less severe than type 3. The disease is almost always inherited. You may get type 1 or 2 if one of your parents carries the gene for the disease. However, you can get type 3 only if both of your parents carry the gene. Although VWD usually runs in families, it can also be associated with certain medical conditions. This is called acquired von Willebrand syndrome.

How do I know if I have it?

It depends on what type you have and how bad it is. You may not notice the symptoms, or you may not have any.

Symptoms of VWD include:

• Bruising from minor injuries

• Nosebleeds that are hard to stop

• If you are a woman, heavy bleeding during your period

• Heavy bleeding after a cut or injury, or during surgery or dental procedures

• Blood in your urine or stool

• If you have severe VWD: bleeding for no apparent reason, pain and swelling in your joints and muscles from bleeding, a bump or bad bruise from bleeding under the skin (called a hematoma)

If you have several of these symptoms, your doctor may order blood tests to evaluate for VWD and other bleeding disorders. These tests check how well your blood clots. Some tests may have to be done more than once to confirm whether you have VWD.

How is it treated?

There is no cure for VWD, but you can take medicine to help your blood clot better. Usually, you need treatment only to control bleeding during surgery and some types of dental work, or after an injury.

You can also do the following to help prevent bleeding:

• Avoid over-the-counter medicines that can affect blood clotting (for example, aspirin and ibuprofen). Always check with your doctor before taking medicine.

• Tell your doctor and dentist that you have VWD, in case you need medicine before certain procedures.

• Wear a medical identification bracelet so that health care workers will know about your disease if you are injured.

• Stay at a healthy weight with exercise, such as swimming, biking, and walking. Avoid high-impact activities, such as football, hockey, wrestling, and heavy weight lifting. Check with your doctor before starting an exercise program.

What should women know about VWD?

Menorrhagia (heavy bleeding during your period) is often the main symptom of VWD in women. You may have menorrhagia if you have blood clots larger than 1 inch in diameter during your period. You may also have to change your pad or tampon more than every hour, especially if you develop low iron levels (anemia). There are other more common causes of menorrhagia, so your doctor will need to rule them out before testing you for VWD.

Some methods of birth control can help lighten bleeding during your period. Surgery to stop your period may be an option if you don't want to get pregnant in the future.

Pregnancy may be difficult if you have VWD because you are more likely to bleed heavily during and after childbirth. However, many women with the disease have successful pregnancies. You will get blood tests during your pregnancy, and you may need medicine at delivery to control bleeding. A doctor who specializes in high-risk pregnancies can help guide you about prenatal care and preventing blood loss.