Patient education: von Willebrand disease (The Basics)

What is von Willebrand disease? — 

von Willebrand disease, or "VWD," is a condition that can cause bleeding. People with VWD sometimes bruise easily, have nosebleeds or heavy menstrual periods, or bleed too much when they have surgery or are injured.

VWD is caused by a change, also called a "variant," in the VWD gene. It runs in families, and is the most common "inherited" bleeding disorder. In some cases, a person might not know they have VWD if the disease is mild.

Rarely, people can get "acquired von Willebrand syndrome." This is when the cause is another condition that is not genetic. Examples include heart valve problems or certain blood disorders.

What are the symptoms of VWD? — 

The symptoms are often mild. For some people, the symptoms are so mild they never have problems.

If you have VWD, you might:

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

●Have gums that sometimes bleed for no reason

●Bruise easily

●Bleed more than normal when having a medical procedure, a surgery, or dental work like getting teeth pulled

●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 VWD? — 

Yes. Most of the time, your doctor will ask you specific questions about past bleeding. This is called a "bleeding assessment tool." They might also ask if any of your family members have VWD or have had problems with bleeding, bruising, or needing blood transfusions.

If your doctor suspects you have VWD, they can order blood tests to check for it. If the blood tests show you have VWD, you will get more tests to figure out exactly which type.

What can I do on my own to reduce bleeding?

●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 careful 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 will have surgery or any procedure that might make you bleed, talk to your doctor about your condition first. Tell your doctor if you have VWD and are pregnant. 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 ways to reduce the bleeding.

How is VWD treated? — 

Most people do not take regular medicines for VWD. 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, get an iron infusion, or (in severe cases) get a blood transfusion.

What if I want to have a baby? — 

If you want to try to get pregnant, or if you are already pregnant, talk with your doctor, nurse, or midwife about your VWD. It's especially important to discuss what to do right after childbirth, when the risk of bleeding is highest.

You will need to be watched closely during 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 VWD is usually less severe during pregnancy. The greatest risk for serious bleeding is right after childbirth. You might need to take extra medicines to prevent bleeding for a week or 2, or sometimes longer.

How can I learn more about VWD? — 

Talk with your doctor or nurse. The National Bleeding Disorders Foundation (formerly called "National Hemophilia Foundation") also has a lot of information. Their website is www.bleeding.org. Their toll-free phone number in the US is 1-888-463-6643.

More on this topic

Patient education: Managing increased bleeding risk (The Basics)
Patient education: Clotting factor blood test (The Basics)
Patient education: Nosebleeds (The Basics)
Patient education: Taking care of bruises (The Basics)
Patient education: Heavy periods (The Basics)

Patient education: von Willebrand disease (Beyond the Basics)
Patient education: Nosebleeds (epistaxis) (Beyond the Basics)
Patient education: Heavy periods (Beyond the Basics)