More facts about von willebrand disease (VWD)

The most common inherited bleeding disorder1

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.1

Real VWD patient Erica smiling at the camera.
Real VWD patient Leslie sitting down looking at the horizon.

What is VWD?

VWD was named after Dr. Erik von Willebrand, who discovered the disease in a 5-year-old Finnish girl in 1924.2 It is a bleeding disorder that makes it difficult to form blood clots, resulting in more frequent bleeds that last longer than normal.1

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.1

What causes VWD?

VWD can be caused by either3:

  • Not having enough von Willebrand factor (VWF)
  • Having VWF that isn't working properly

There are 3 types of VWD1

All 3 types of VWD may cause severe or frequent bleeds or symptoms.4

  • 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) in order to form blood clots.5

VWF works in two ways5:

Blood cells icon.

Platelet glue

VWF acts like glue to help blood-clotting cells called platelets stick together and form a plug at the site of the wound.

Safety shield with checkmark icon.

FVIII support

VWF helps the FVIII that 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 include6:

  • Excessive bleeding, either from an injury or after surgery or 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
Von Willebrand disease bleed tracker brochure.

A simple way to track bleeds

Tracking your bleeds can help your healthcare provider better understand how VWD is affecting your body. Download our handy bleed tracker to get started today.

Download bleed tracker

Ready to talk to your healthcare provider?

Our easy-to-use Discussion Guide, used alongside our bleed tracker, can help you speak to your healthcare provider about finding a treatment that's right for you.

Download the guide
Von Willebrand disease discussion guide.

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 or not.7

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.8 As a result, it is suspected that there are many undiagnosed people living with VWD.9 76% of 42 men with VWD had been diagnosed by age 10, but 50% of 38 women with VWD were not diagnosed until after age 12.10 An accurate diagnosis is extremely important for women in order to avoid unnecessary and/or invasive treatments, such as hysterectomy.5

Real VWD patient Erica sitting around the table with her family and friends. VONVENDI® container and glass bottles.

Is VONVENDI® [von Willebrand factor (Recombinant)] right for you?

VONVENDI was created specifically to treat bleeding episodes in adults 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.5111

Discover VONVENDI
Real VWD patient Leslie smiling.
Living with VWD

See how VWD can change your life.

Learn more
Doctor going over documents with her patient.
VONVENDI safety

See the most common side effects.

Learn more

References

  1. What is von Willebrand disease? Centers for Disease Control and Prevention website. Accessed July 9, 2020. http://www.cdc.gov/ncbddd/vwd/facts.html
  2. Nichols WL, Hultin MB, James AH, et al. Von Willebrand disease (VWD): evidence-based diagnosis and management guidelines, the National Heart, Lung, and Blood Institute (NHLBI) Expert Panel report (USA). Haemophilia. 2008;14(2):171-232.
  3. Gill JC, Giancarlo C, Windyga J, et al. Hemostatic efficacy, safety, and pharmacokinetics of a recombinant von Willebrand factor in severe von Willebrand disease. Blood. 2015;126(17):2038-2045.
  4. The Lewin Group. Strategic Summit on Von Willebrand Disease. National Hemophilia Foundation. 2015. Accessed July 9, 2020. https://www.hemophilia.org/sites/default/files/article/documents/NHF-Strategic-Summit-Report-on-von-Willebrand-disease_1.pdf
  5. Von Willebrand disease. National Organization for Rare Disorders website. Accessed July 9, 2020. https://rarediseases.org/rare-diseases/von-willebrand-disease/
  6. Von Willebrand disease. Mayo Clinic website. Accessed July 9, 2020. https://www.mayoclinic.org/diseases-conditions/von-willebrand-disease/symptoms-causes/syc-20354978
  7. von Willebrand Disease (VWD) Diagnosis. Centers for Disease Control website. Accessed July 9, 2020. https://www.cdc.gov/ncbddd/vwd/diagnosis.html
  8. Kirtava A, Crudder S, Dilley A, Lally C, Evatt B. Trends in clinical management of women with von Willebrand disease: a survey of 75 women enrolled in haemophilia treatment centres in the United States. Haemophilia. 2004;10(2):158-61.
  9. All about von Willebrand disease...for people with von Willebrand disease and their families. Canadian Hemophilia Society. Accessed July 9, 2020. http://www.hemophilia.ca/files/AllAboutVWDRevisedEng.pdf
  10. Data and Statistics on von Willebrand Disease. CDC website. Accessed July 9, 2020. https://www.cdc.gov/ncbddd/vwd/data.html
  11. VONVENDI Prescribing Information
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