Community
Von Willebrand Disease Community
For people living with VWD (all types), their families, and caregivers.
This information is for educational purposes only and is not medical advice. Always consult your healthcare provider about your specific condition and treatment.
When to seek help
Seek care for a head injury, bleeding that will not stop, or heavy menstrual bleeding that causes dizziness or shortness of breath.
If you are experiencing a medical emergency, contact your local emergency services immediately.
Overview
Von Willebrand Disease (VWD) is the most common inherited bleeding disorder. It affects a protein called von Willebrand factor that helps your blood clot. Most people with VWD have a mild form and may not know they have it.
Prevalence
About 1 in 100 to 1 in 1,000 people have VWD.
Symptoms
- Frequent or long-lasting nosebleeds
- Easy bruising
- Heavy or long menstrual periods
- Bleeding gums after brushing or dental work
Causes
VWD is caused by low levels or a defect in von Willebrand factor, a protein that helps platelets stick together and clot. It is almost always inherited from a parent.
Types
- Type 1 - low levels (most common, usually mild)
- Type 2 - the factor is present but does not work properly (has subtypes)
- Type 3 - little or no factor (rarest and most severe)
Diagnosis
Diagnosed with blood tests that measure von Willebrand factor, factor VIII, and how well your platelets work. Because levels fluctuate, testing may need to be repeated before a diagnosis is confirmed.
Treatment
Treatment depends on severity. Options include desmopressin (DDAVP), factor concentrates, and medications that help your blood clot.
Living with it
- Tell dentists and surgeons you have VWD before any procedure
- Avoid aspirin and NSAIDs like ibuprofen unless your doctor says otherwise
- Wear a medical ID
- Track heavy or prolonged periods and report them to your doctor
Complications
- Heavy bleeding after surgery or childbirth
- Anemia from heavy menstrual bleeding
- Rarely, joint and internal bleeding (type 3)
Frequently asked questions
Is VWD the same as hemophilia?
No. Both cause bleeding, but they affect different clotting proteins. VWD is much more common and is usually milder than hemophilia.
Can I take ibuprofen?
Usually not recommended, because NSAIDs can increase bleeding. Always ask your hematologist before taking any pain reliever.
Join the Von Willebrand Disease Community community
Talk with people who understand, share what helps, and find support from others living with von willebrand disease community. Private, moderated, and free.
Posts in this community reflect personal experiences, not medical advice. Always talk to your doctor before changing your treatment.