What is von Willebrand Disease (VWD)?

Von Willebrand Disease is a genetic bleeding disorder where patients have a deficient or defective von Willebrand factor (VWF), a protein in the blood that is important for clot formation. While there is no cure for VWD, there are treatment options.¹

When a blood vessel is injured and bleeding occurs in people with VWD, it takes longer for their blood to clot and for the bleeding to stop. VWF helps blood clot in 2 ways¹:

Platelet glue

VWF functions like glue to help platelets (blood-clotting cells) stick together and form a platelet plug at the site of the wound

FVIII support

VWF also stabilizes, protects, and carries factor VIII (another clotting protein) to the site of the injury. VWF prevents factor VIII from being broken down in the blood stream

What are the symptoms of VWD?

VWD symptoms can include^1,2:

• Excessive bleeding, either from an injury or after surgery, dental work, or childbirth
• Nosebleeds that last longer than 10 minutes
• Bloody urine or stools
• Easy bruising or lumpy bruises

Women with VWD may experience additional symptoms, such as heavy menstrual bleeding.¹

How common is VWD?

VWD is the most common bleeding disorder

About 1% of people in the US have VWD

3.2 million people in the US may have VWD

VWD occurs equally in men and women

What is the difference between hemophilia and VWD?

While both VWD and hemophilia are bleeding disorders, they are not the same disease. While VWD affects men and women equally, hemophilia is more common in men. People with VWD have a deficiency of VWF and are more likely to experience bleeds in the lining of the nose, intestines, uterus, and vagina. People with hemophilia have a deficiency of factor VIII or factor IX and are more likely to experience bleeding in joints and within muscles.^3,4

There are 3 inherited types of VWD³

• Type 1 is the most common form of VWD. People with type 1 have low levels of VWF and may have low levels of factor VIII.
• Type 2 is divided into subtypes (2A, 2B, 2M, and 2N) depending on the specific problem with the VWF in the blood. Treatment for people with type 2 can depend on which subtype they have.
• Type 3 is rare and is the most severe form of VWD. People who have type 3 usually have little to no VWF and low levels of factor VIII.

“There are a lot of things people don’t understand about von Willebrand.” — Kelly, parent

How is VWD inherited?

VWD can be inherited from one or both parents.⁵

It is rare but possible for someone to develop VWD later in life. If VWD is acquired (not inherited from a parent or a result of a gene mutation), it cannot be passed along to any children. VWD can be acquired when a person’s own immune system destroys his or her VWF, often as a result of another disease or medication usage.³

In rare instances, a child can have VWD even without a family history of the disease. This can happen as a result of a spontaneous mutation (change) in the gene. The child can later pass the disease on to his or her children.³

How is VWD diagnosed?

VWD is often diagnosed by using series of blood tests along with your personal history with bleeds. If your doctor thinks you may have VWD, they will likely⁶:

Ask about your experience with excessive bleeding or bruising

Research whether you have a family history of bleeding

Give you a physical exam

Run tests such as a complete blood count, a VWF antigen test, and a factor VIII clotting activity test

Check for signs of other conditions such as liver disease or lupus

People with severe VWD often have symptoms as babies and may be diagnosed early, but in milder cases VWD often isn't diagnosed until adulthood. An accurate diagnosis is extremely important for women in order to avoid unnecessary and/or invasive treatments, such as hysterectomy.¹