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Living with von Willebrand Disease

04/10/2014 08:47 AM EDT

Source: National Heart, Lung, and Blood Institute
Related MedlinePlus Page: Platelet Disorders

Living With von Willebrand Disease

If you have von Willebrand disease (VWD), you can take steps to prevent bleeding and stay healthy.

For example, avoid over-the-counter medicines that can affect blood clotting, such as 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 ask your doctor whether you need medicine before dental work to reduce bleeding.

You also may want to tell other people about your condition, like your employee health nurse, gym trainer, and sports coach. Making them aware will allow them to act quickly if you have an injury.

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.

Be physically active and maintain a healthy weight. Physical activity helps keep muscles flexible. It also helps prevent damage to muscles and joints. Always stretch before exercising.

Some safe physical 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. Talk with them about your diagnosis and suggest that they get tested too.

Pregnancy and von Willebrand Disease

Pregnancy can be a challenge for women who have VWD. Blood levels of von Willebrand factor and factor VIII tend to increase during pregnancy. However, women who have VWD can have bleeding problems during delivery. They also are likely to have heavy bleeding for an extended time after delivery.

You can take steps to lower the risk of complications during pregnancy. If possible, talk with a hematologist and an obstetrician who specializes in high-risk pregnancies before you become pregnant.

A hematologist is a doctor who specializes in diagnosing and treating blood disorders. An obstetrician is a doctor who provides treatment and 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 you need to take steps 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-ah) 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 steps for safety, most women who have VWD can have successful pregnancies.

Children and von Willebrand Disease

If your child has VWD that's severe enough to cause bleeding, anyone who cares 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 severe VWD. This information will help them handle the situation if your child has an injury.