🗳️ Does von Willebrand disease run in your family?

Yes

No

I’m not sure

Thanks! You've successfully submitted your vote.

Sign up to view the results!

Continue with Facebook

Continue with Google

Continue with Email

By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.

Already a member? Log In

A von Willebrand disease (VWD) diagnosis can raise questions: Did you inherit it, and can you pass it down to your children? In this article, we’ll explain how VWD can run in families. We’ll also explain how this is different from hemophilia.

What Is von Willebrand Disease?

VWD is the most common inherited bleeding disorder, a condition that makes it difficult for your blood to clot. This means that when you’re injured or have surgery, you’ll bleed longer than someone who doesn’t have VWD. You may also experience easy bruising, nosebleeds that don’t end quickly, or very heavy menstrual periods.

When a person starts to bleed, a protein called von Willebrand factor (VWF) attaches to other proteins in the blood and to blood cells called platelets. Together, platelets, VWF, and the other proteins form a clot to stop the bleeding.

You can inherit von Willebrand disease from either your mother or your father.

In people with VWD, there’s a problem with VWF. They may have lower levels of VWF, or it may not work as it should. As a result, it can take longer to form a clot and stop bleeding.

Types of von Willebrand Disease

There are three types of VWD. Type 1 VWD is the mildest and most common form. People with type 1 VWD have low blood levels of VWF and may also have less of another blood-clotting protein called factor VIII (factor 8 — Roman numerals are usually used in discussions of clotting factors).

The second most common form of VWD is type 2. People with type 2 VWD have normal VWF levels, but the protein doesn’t work as it should. This form has four subtypes (type 2A, type 2B, type 2M, and type 2N), each with differences in how the VWF protein works.

People with type 3 VWD have very little or no VWF in their blood. Type 3 VWD is the rarest form of the disease and usually has the most severe bleeding episodes.

The von Willebrand Disease Inheritance Pattern

Most people who have VWD inherit it from their parents and are born with the disease. VWD is caused by mutations (gene changes) in the von Willebrand factor gene.

Genes are made up of DNA, and you inherit them from your parents. Genes give your cells instructions, such as how to make von Willebrand factor. Each copy of a gene is called an allele, and you typically have two alleles for every gene.

Your genes are organized on chromosomes. Each cell in your body has 23 pairs of chromosomes, for a total of 46 chromosomes. One set comes from your mother, and the other set comes from your father.

Two chromosomes are called sex chromosomes: X and Y. Typically, people are born with either two X chromosomes (and usually assigned female at birth) or one X chromosome and one Y chromosome (and usually assigned male at birth). The other chromosomes, pairs 1 through 22, are called autosomal chromosomes.

For type 3 and type 2N von Willebrand disease, you need two mutated copies of the VWF gene (one from your mother and one from your father) to have VWD.

The VWF gene is found on chromosome 12. Everyone has two copies of this chromosome, so babies inherit one copy, or allele, of the VWF gene from each parent.

Because the VWF gene is on an autosomal chromosome, VWD happens equally often in males and females, according to Haemophilia Foundation Australia. Depending on what type of VWD you have, you can inherit VWD in an autosomal dominant or autosomal recessive pattern, as we describe below.

Autosomal Dominant Inheritance of VWD

One way to inherit VWD is called autosomal dominant inheritance. VWD type 1 and most forms of type 2 (types 2A, 2B, and 2M) are inherited in an autosomal dominant inheritance pattern. This means that one mutated copy of the VWF gene is enough to give you VWD. So if your mother or your father has this type of VWD, you have a 50 percent chance of inheriting the abnormal VWF allele and having VWD.

In the rare situation that both your mother and father have an autosomal dominant form of VWD, they each have a 50 percent chance of passing on a mutated copy. In this case, there’s a 50 percent chance you’ll receive one normal and one abnormal allele of the VWF gene, a 25 percent chance of receiving two normal alleles, and a 25 percent chance of receiving two abnormal ones.

People who inherit two mutated copies will have a more severe form of VWD than people who inherit just one copy of a VWF gene variation.

Autosomal Recessive Inheritance of VWD

Type 3 and type 2N VWD are inherited in an autosomal recessive inheritance pattern. This means you need two mutated copies of the VWF gene (one from your mother and one from your father) to have VWD.

If you have just one abnormal VWF allele, you typically won’t have symptoms of VWD, but you can still pass the genetic variation to your children. A person who has one changed allele for an autosomal recessive condition is called a carrier.

People with types 3 and 2N VWD often have parents who are carriers but don’t have VWD. If two carriers have children, there’s a 25 percent chance of their child receiving two normal VWF alleles and a 50 percent chance of receiving one normal and one mutated, or changed, allele. In both cases, the child won’t have VWD.

However, there’s a 25 percent chance of inheriting an abnormal allele from each parent and having VWD. A person with type 3 or 2N VWD will always pass down an abnormal allele, but their children will be carriers and won’t have VWD unless they also receive an abnormal allele from the other parent.

Acquired von Willebrand Syndrome

Another form of VWD, acquired von Willebrand syndrome, is not inherited but develops as a complication of another health condition. Acquired VWD can be linked to certain cancers, autoimmune diseases, or heart and blood vessel conditions. These rare cases are not caused by inherited gene mutations or passed on to children.

Inheritance of von Willebrand Disease vs. Hemophilia

Hemophilia is another bleeding disorder with symptoms similar to VWD. However, hemophilia differs from VWD in several ways, including how it’s inherited. Most cases of hemophilia are caused by changes on the X chromosome, one of the sex chromosomes.

Hemophilia is inherited recessively, so one healthy allele can usually compensate for a mutated one. In most cases, because females have two X chromosomes, they would usually need to inherit an abnormal allele from both parents to have hemophilia.

If one parent has VWD type 1 or most forms of type 2, you have a 50 percent chance of having VWD.

However, per MedlinePlus, a government health resource, some females with one changed gene copy can still have bleeding symptoms. In some cases, females can also have hemophilia.

Males have just one X chromosome, so inheriting a mutated allele from their mother means they’ll have hemophilia. This is why hemophilia is much more common in males and rarer in females.

In contrast, VWD is inherited on chromosome 12, not the X chromosome. This means that all babies have the same odds of inheriting VWD. However, women may notice symptoms more often because of heavy periods or postpartum bleeding, according to The Hemophilia, von Willebrand Disease & Platelet Disorders Handbook.

It’s also important to remember that most cases of VWD have a dominant pattern of inheritance, so just one abnormal allele is needed to cause the disease.

Genetic Testing for Von Willebrand Disease

If family members have VWD or you have symptoms of a bleeding disorder, genetic testing may be worth considering. Your hematologist may start with standard blood tests to diagnose VWD, checking blood counts, platelets, or VWF. They may also test how well your blood clots.

If you have VWD, genetic sequencing can help determine which type you have. Many therapies are specific to your subtype of VWD, so an accurate diagnosis is important to ensure effective treatment.

Genetic testing can also tell you if you’re a carrier of a VWF gene variation that has recessive patterns of inheritance and may be passed on to children. A doctor may suggest prenatal genetic testing if one parent has a known gene change.

Your hematology team can provide more specific information about genetic testing for VWD.

Join the Conversation

On MyHemophiliaTeam, people share their experiences with bleeding disorders, get advice, and find support from others who understand.

Does von Willebrand disease run in your family? Let others know in the comments below.