Patient education: von Willebrand disease (The Basics)

What is von Willebrand disease? — Von Willebrand disease, also called "VWD," is a condition that can cause bleeding. People with von Willebrand disease sometimes bruise easily, have nosebleeds or heavy menstrual periods, or bleed too much when they have surgery or are in an accident.

Von Willebrand disease is caused by a variant of the VWD gene and runs in families. In some cases, a family might not know about it if the disease is mild. Rarely, people can get something called "acquired von Willebrand syndrome." This is when the cause is not genetic, but related to another condition.

What are the symptoms of von Willebrand disease? — The symptoms of von Willebrand disease are often mild. For some people, the symptoms are so mild that they never have problems.

If you have von Willebrand disease, you might:

●Get nosebleeds a lot or have nosebleeds that last a long time

●Notice that your gums sometimes bleed for no reason

●Bruise easily and form lumps under your bruises

●Bleed more than normal when having medical procedures or surgery

●Have heavy or long-lasting menstrual periods (longer than 7 to 10 days or with large blood clots).

●Have very heavy bleeding after giving birth.

Is there a test for von Willebrand disease? — Yes. The first step is usually for your doctor to learn much as possible about whether you have had bleeding in the past. This can be done by asking you specific questions, also called a "bleeding assessment tool." They might also ask if any of your family members have the disorder or have had problems with bleeding or bruising.

If there is a reason to think that you have von Willebrand disease, your doctor can order blood tests to check for it. If the blood tests show you have von Willebrand disease, more tests are done to figure out exactly which type.

Is there anything I can do on my own to reduce bleeding? — Yes:

●Do not take medicines that have aspirin, or medicines called "NSAIDs" without talking to your doctor first. Examples of NSAIDs include ibuprofen (sample brand names: Advil, Motrin) and naproxen (sample brand name: Aleve). These medicines can make bleeding worse.

●Be extra safe about preventing injuries if your doctor tells you to. For example, you might need to avoid contact sports, like hockey or football.

●Plan ahead for surgery, dental work, or childbirth. If you are going to have surgery or any procedure that might make you bleed, talk to your doctor about your condition first. Do the same if you are going to have a baby. That way your doctor can be ready with the right medicines if you start to bleed too much.

●Talk to your doctor if you are concerned about heavy periods. There are different ways to reduce menstrual bleeding.

How is von Willebrand disease treated? — Most people do not take regular medicines for von Willebrand disease. But you might get treatments for bleeding, such as:

●If you have heavy menstrual periods, you can take hormonal pills or other medicines to reduce bleeding.

●If you have serious bleeding or need surgery, you might get medicines to help prevent or treat bleeding.

●If you have lost a lot of blood, you might need to take iron supplements.

What if I want to have a baby? — If you are thinking about getting pregnant, or if you are already pregnant, be sure to talk with your doctor, nurse, or midwife about your von Willebrand disease. It's especially important to discuss what to do after you have given birth, when the risk of bleeding is highest.

You will need to be watched closely during your pregnancy. This way, serious bleeding can be prevented or treated. Also, you will need to talk with your doctor about whether you can get an epidural or spinal block during labor. You might need other treatments to reduce your risk of bleeding.

Most people do not need treatment while they are pregnant, because von Willebrand disease is usually less severe during pregnancy. The greatest risk for serious bleeding is right after delivery. You might need to take extra medicines to prevent bleeding for a week or 2, or sometimes longer.

More on this topic

Patient education: Taking care of bruises (The Basics)
Patient education: Heavy periods (The Basics)
Patient education: Nosebleeds (The Basics)

Patient education: von Willebrand disease (Beyond the Basics)
Patient education: Heavy or prolonged menstrual bleeding (menorrhagia) (Beyond the Basics)
Patient education: Nosebleeds (epistaxis) (Beyond the Basics)