Living With von Willebrand Disease

If you have von Willebrand disease (VWD), you can take steps to prevent bleeding and stay healthy. 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 that you have VWD. Your dentist can talk to your doctor about whether you need medicine before dental work to reduce bleeding. You also may want to 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 and 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.

Your parents, brothers and sisters, and children also may have VWD. Consider telling them about your diagnosis and suggesting that they get tested too.

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 who have VWD can have bleeding complications during delivery. They also are likely to have heavy bleeding for an extended time after delivery.

However, you can take steps to lower the risk of complications during pregnancy. Consult a hematologist and an obstetrician who specialize in high-risk pregnancies before you become pregnant.

A hematologist is a doctor who specializes in treating blood diseases and disorders. An obstetrician is a doctor who treats and provides care for pregnant women.

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

Before you have any invasive procedure, such as amniocentesis (AM-ne-o-sen-TE-sis), discuss with 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 (AN-es-THE-ze-a) and to discuss taking medicine to reduce your bleeding risk. The term "anesthesia" refers to a loss of feeling and awareness. Some types of anesthesia temporarily put you to sleep, while others only numb certain areas of your body.

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

Children and von Willebrand Disease

If your child has VWD that's severe enough to pose a major 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, especially 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.