Von Willebrand Disease (vWD): How to Care for Your Child

Von Willebrand disease (vWD) is a common bleeding problem that usually runs in families — about 1 in 100 people have a form of it. Treatments are available to help prevent or control the bleeding.

Normally, when a blood vessel is cut or torn, special proteins in the blood help platelets (small blood cells) bunch together and plug the leak, which stops the bleeding. Other proteins then come to the injured area and help form a strong clot (a lump of blood and proteins that helps prevent further bleeding).

One of the special clotting proteins is called von Willebrand factor (vWF). In vWD, clots don't form properly because the body doesn't make enough vWF or the vWF doesn't work as it should. Sometimes the disease also affects factor VIII ("factor 8"), another clotting protein that is carried by vWF.

Kids with vWD may bruise easily; get nosebleeds; or have prolonged bleeding when they get cuts, have surgery, or have teeth pulled. Girls may have heavy periods.

There are several types of vWD that may have more or fewer symptoms and need different treatment. Sometimes autoimmune disorders (such as lupus) or other illnesses can cause a type of vWD.

When health care providers suspect that a child may have vWD, they order blood tests to measure the amounts of clotting factors and how well they work. This will identify the type of vWD and help determine which treatments would be best.

Medicines might be used to help blood clot properly. Most work by increasing the amount of von Willebrand factor and/or factor VIII in the blood. Depending on the type of medication, it is typically given by injection or as a nasal spray.

• Give your child any medicine as prescribed by your health care provider.

• If bleeding occurs, apply pressure to the area to help it stop.

• During nosebleeds, pinch the soft part of the nostrils together for 10 minutes and have your child lean slightly forward to keep blood from going down the throat.

• Ask your health care provider if your child can participate in contact sports.

• Acetaminophen is the preferred pain reliever and fever reducer for kids with vWD. Your child should avoid aspirin, ibuprofen, naproxen sodium, and other nonsteroidal anti-inflammatory drugs. They can make it harder for the blood to clot.

Your child:

• Has excessive or unexplained bleeding.

• Is going to have surgery, including dental work.

• Becomes pregnant.

• Your child has bleeding that lasts more than 20 minutes even after you've applied pressure to the area and followed other directions to stop bleeding.

If your daughter has started her period, she might want to take extra pads or a change of clothes in case of accidents. Birth control pills can sometimes reduce heavy menstrual bleeding.