More facts about von willebrand disease (VWD)
The most common inherited bleeding disorder
VWD occurs in approximately 1% of the population, including more than 3 million people in the US alone. It's primarily a hereditary disease and occurs in women and men in equal numbers.
What is VWD?
VWD was named after Dr. Erik von Willebrand, who discovered the disease in a 5-year-old Finnish girl in 1924. It is a bleeding disorder that makes it difficult to form blood clots, resulting in more frequent bleeds that last longer than normal.
VWD is usually hereditary, meaning it's passed down from a parent to a child. In some rare instances, a child can have the disease without a family history of VWD.
What causes VWD?
VWD can be caused by either:
- Not having enough von Willebrand factor (VWF)
- Having VWF that isn't working properly
There are 3 types of VWD
All types of VWD may cause severe or frequent bleeds or symptoms.
- Type 1 — Low levels of VWF
- Type 2 — VWF doesn't work the way it should
- Type 3 — Very little or no VWF
What is von Willebrand factor (VWF)?
VWF is a blood protein that helps your body form blood clots that stop bleeding. Your body needs the right amount of functional VWF and factor VIII (FVIII) to form blood clots.
VWF works in two ways:
Platelet tape
VWF acts like tape to help blood-clotting cells called platelets stick together and form a plug at the site of the wound.
FVIII support
VWF helps the FVIII you have in your body by stabilizing, protecting, and carrying it to the site of the injury.
What are VWD signs and symptoms?
VWD symptoms include:
- Excessive bleeding, either from an injury or after surgery, dental work, or childbirth
- Nosebleeds that last longer than 10 minutes
- Heavy or long menstrual bleeding
- Bloody urine or stools
- Easy bruising or lumpy bruises
How is VWD diagnosed?
In most cases, diagnosing VWD involves reviewing your personal history of abnormal bleeding or bruising, along with screening and diagnostic tests. These tests show your healthcare provider the amount of clotting proteins (VWF and FVIII) in your blood and if those proteins are functioning properly.
A long road to diagnosis
Even though it's the most common inherited bleeding disorder, many people with VWD face a long road to diagnosis. In one survey of women with VWD, there was an average of 16 years (range 0-39) between the first symptoms and diagnosis of a bleeding disorder. As a result, it is suspected that many people living with VWD are undiagnosed. Of 42 men with VWD, 76% had been diagnosed by age 10. In contrast, 50% of 38 women with VWD were not diagnosed until after age 12. An accurate diagnosis is extremely important for women to avoid unnecessary and/or invasive treatments, such as hysterectomy.
Is VONVENDI® right for you?
VONVENDI was created specifically to treat bleeding episodes in adults and children with VWD. When infused into your blood stream, it acts like your body's natural von Willebrand factor (VWF), helping to form clots and helping your own FVIII to work.
VONVENDI is also the first and only recombinant treatment for VWD that's approved for 3 uses, including:
- On-demand treatment and control of bleeding episodes in adults and children
- Perioperative management of surgical bleeding in adults and children
- Routine prophylaxis to reduce the frequency of bleeding episodes in adults
