Overview
Von Willebrand disease is a lifelong bleeding condition that makes it hard for blood to clot. People with the condition either have low levels of von Willebrand factor, a protein that helps blood clot, or the protein they have doesn't work well.
Most people with the condition are born with it because the gene that causes it can be passed down from one or both parents. But warning signs, such as heavy menstrual bleeding or bleeding for a long time after dental work, might not show up for years.
Von Willebrand disease can't be cured. But there are treatments and self-care that can help people with this condition lead active lives.
Symptoms
The most common symptom of von Willebrand disease is bleeding more than expected.
There are three main types of von Willebrand disease. The amount of bleeding varies from one person to another, depending on the type of the condition and how bad it is.
If you have von Willebrand disease, you might have:
- Bleeding for a long time from an injury or after surgery or dental work.
- Nosebleeds that last longer than 10 minutes.
- Heavy or long menstrual bleeding.
- Heavy bleeding during labor and delivery or after delivery.
- Blood in urine or stool.
- Easy bruising or lumpy bruises.
- With more-serious forms of von Willebrand disease, there may be sudden bleeding into joints.
Menstrual symptoms might include:
- Blood clots greater than 1 inch (2.5 centimeters) across in menstrual blood.
- The need to change a menstrual pad or tampon more than once an hour.
- The need to use double sanitary protection for menstrual flow.
- Symptoms of anemia, including tiredness or shortness of breath.
Many people with von Willebrand disease don't know they have it because they have no symptoms or the symptoms are mild.
When to see a doctor
Contact your healthcare professional if you have bleeding that lasts a long time or is hard to stop.
Causes
The usual cause of von Willebrand disease is a changed gene passed through families. Conditions that happen in this way are called inherited. The gene manages von Willebrand factor, a protein needed for blood clotting.
When you have low levels of this protein or the protein doesn't work as it should, small blood cells called platelets can't stick together well. The platelets also can't attach themselves to blood vessel walls after an injury.
This gets in the way of the clotting process. Sometimes it causes bleeding that is hard to stop.
Many people with von Willebrand disease also have low levels of factor VIII, another protein that helps in clotting.
Rarely, people who didn't get a changed gene from a parent can get von Willebrand disease later in life. This is called acquired von Willebrand syndrome. The cause is likely another medical condition.
Risk factors
The main risk factor for von Willebrand disease is having a family history of it. Parents pass down the gene that causes the condition to their children.
The condition often is an autosomal dominant inherited disorder, which means you need a changed gene from only one parent to get the condition. If you have the gene for von Willebrand disease, you have a 50% chance of passing on this gene to your children.
The most serious form of the condition is autosomal recessive. This means both of your parents pass a changed gene to you.
Complications
Rarely, von Willebrand disease can cause bleeding that won't stop. This can be life-threatening. Other complications of von Willebrand disease can include:
- Anemia. Heavy menstrual bleeding can cause iron deficiency anemia.
- Swelling and pain. This can be a result of bleeding in the joints or soft tissue.
Prevention
If you plan to have children and have a family history of von Willebrand disease, think about getting genetic counseling. If you carry the gene for von Willebrand disease, you can pass it down to your children even if you don't have symptoms.
