Living With von Willebrand Disease

Preventing bleeding and staying healthy are important if you have von Willebrand disease (VWD). You should:

• Avoid over-the-counter medicines that can affect blood clotting, including aspirin, ibuprofen, and other nonsteroidal anti-inflammatory drugs (NSAIDs).
• Always check with your doctor before taking any medicines.
• Tell your doctor, dentist, and pharmacist if you have VWD. Your dentist can talk to your doctor about whether you need medicine before dental work to reduce bleeding. You also should tell people like your employee health nurse, gym trainer, and sports coach about your condition.
• Consider wearing a medical ID bracelet or necklace if you have a serious form of VWD (for example, type 3). In case of a serious accident or injury, the health care team treating you will know that you have VWD.
• Exercise regularly and maintain a healthy weight. Exercise helps keep muscles flexible. It also helps prevent damage to muscles and joints. Always stretch before exercising.

Some safe exercises or activities are swimming, biking, and walking. Football, hockey, wrestling, and lifting heavy weights are not safe activities if you have bleeding problems. Always check with your doctor before starting any exercise program.

Since your parents, brothers and sisters, and children may also have von Willebrand disease, you should consider telling them about your diagnosis and suggesting that they get tested.

Pregnancy and von Willebrand Disease

Pregnancy can be a challenge for women who have VWD. Although blood levels of von Willebrand factor and factor VIII tend to increase during pregnancy, women with VWD can have bleeding complications during delivery. They also are likely to have heavy bleeding for an extended period after delivery.

However, there are things you can do to reduce the chances of complications during pregnancy. Consult a hematologist and an obstetrician who specialize in high-risk pregnancies before you become pregnant.

Consider using a center that specializes in high-risk obstetrics and has a hematologist on the staff for prenatal care and delivery.

Before you have any invasive procedure, such as amniocentesis, ask your doctor whether anything needs to be done to prevent serious blood loss.

During your third trimester, you should have blood tests to measure von Willebrand factor and factor VIII to help plan for delivery.

You also should meet with an anesthesiologist to review your choices for anesthesia and to discuss taking medicine to reduce your bleeding risk.

With these precautions, most women with VWD can have successful pregnancies.

Children and von Willebrand Disease

If your child has von Willebrand disease that's severe enough to pose a significant risk of bleeding, anyone who is responsible for him or her should be told about the condition.

For example, the school nurse, teacher, daycare provider, coach, or any leader of afterschool activities should know, particularly if your child has one of the more severe forms of VWD. This information will help them handle the situation if your child has an injury.