Living with von willebrand disease (vwd)

A rare disease with unique impacts

Bleeding caused by VWD can affect every part of your life, from your career to your hobbies to your family life. However, everyone's experience is different.1

Real VWD patient Leslie holding her backpack straps and smiling.

With VWD, bleeds are always a risk

People living with VWD experience different types of bleeds that affect them in different ways. In a CDC study of 102 women with VWD, 95% report heavy menstrual bleeding, while 92% report bleeding after minor injuries.2

Real VWD patient Nicole walking on a sidewalk holding her purse.

Real VWD
patients. Real experiences.

Headshot of Leslie, Real VWD patient smiling.

Leslie's story

Diagnosed with VWD in 2003

"When I fell, I would be covered with big, painful bruises, and the cuts I got would bleed a lot."

See Leslie's story
Headshot of Nicole, Real VWD patient smiling.

Nicole's story

Diagnosed with VWD in 2009

"In junior high school and high school, I began to miss days every time I had my menstrual cycle."

See Nicole's story
Headshot of Erica, Real VWD patient smiling.

Erica's story

Diagnosed with VWD in 1981

"Over the years, I tried all kinds of different medications. I saw loads of hematologists. They always assumed sickle cell or hemophilia. It was very frustrating."

See Erica's story
Real VWD patient Erica with her hand in her pocket smiling at the camera.

How VWD can affect women

Even though VWD occurs with similar frequency in both men and women, it's sometimes viewed as affecting women more often. This is likely because women face the challenge of increased or prolonged bleeding during menstrual periods (menorrhagia or heavy menstrual bleeding) and childbirth.3

Some signs of heavy menstrual bleeding include4:

  • Bleeding for more than 7 days
  • Changing a tampon or pad every 2 hours or less
  • Passing blood clots larger than 1 quarter

To remember these signs of heavy menstrual bleeding, just think 7, 2, 1.

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.
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
Woman wearing a sweater looking at VONVENDI® information on her tablet.
More facts about VWD

Get to know the most common inherited bleeding disorder.641

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

See the most common side effects.

Learn more

References

  1. 10 things every adult should know. National Hemophilia Foundation, Steps for Living. Accessed July 9, 2020. https://stepsforliving.hemophilia.org/step-out/10-things-every-adult-should-know
  2. Data and Statistics on von Willebrand Disease. CDC website. Accessed July 9, 2020. https://www.cdc.gov/ncbddd/vwd/data.html
  3. Von Willebrand disease. National Organization for Rare Disorders website. Accessed July 9, 2020. https://rarediseases.org/rare-diseases/von-willebrand-disease/
  4. Effects of puberty on girls with a bleeding disorder. Steps for Living website. Accessed July 9, 2020. https://stepsforliving.hemophilia.org/next-step/maintaining-a-healthy-body/growing-up-puberty/effects-of-puberty-on-girls-with-a-bleeding-disorder
  5. VONVENDI Prescribing Information
  6. What is von Willebrand disease? Centers for Disease Control and Prevention website. Accessed July 9, 2020. http://www.cdc.gov/ncbddd/vwd/facts.html
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