How do I know if I have Von Willebrand Disease?

Von Willebrand Disease (VWD) is a common, often underdiagnosed genetic bleeding disorder caused by a deficiency or dysfunction of the von Willebrand factor protein, which helps blood clot. You may suspect you have Von Willebrand Disease if you experience a lifelong history of easy bruising, frequent nosebleeds, or heavy menstrual bleeding that exceeds typical physiological norms.

What are the early signs of Von Willebrand Disease?

Because Von Willebrand Disease is a spectrum disorder, symptoms vary significantly from person to person. Many individuals with mild forms may go undiagnosed until they experience significant blood loss during surgery or childbirth. Early indicators often include gums that bleed easily when brushing, skin that bruises from minor bumps, and prolonged bleeding from small cuts that lasts longer than 10 minutes. If you notice these patterns, it is important to track them in a symptom diary to share with your healthcare provider.

How can I recognize patterns of Von Willebrand Disease?

Distinguishing between normal variation and potential Von Willebrand Disease requires looking at the frequency and severity of your bleeding events. While occasional bruising is common, VWD often presents as a persistent, lifelong pattern. Key patterns to monitor include:

• Menstrual Health: Menstrual periods lasting longer than 7 days or requiring a change of sanitary products every hour.


• Surgical History: Excessive bleeding following dental extractions, tonsillectomies, or other minor procedures.


• Family History: Having first-degree relatives who also report easy bruising or bleeding disorders, as Von Willebrand Disease is typically inherited in an autosomal dominant pattern.


• Nosebleeds: Frequent, spontaneous nosebleeds (epistaxis) that are difficult to stop.

When should I talk to my doctor and what tests should I request?

If you suspect you have Von Willebrand Disease, schedule an appointment with your primary care physician or a hematologist. Be specific: instead of saying "I bruise easily," explain the frequency, the size of the bruises, and how long minor cuts take to clot. To investigate the possibility of Von Willebrand Disease, ask your doctor about a specific "VWD panel," which typically includes:

1. Von Willebrand factor (VWF) antigen test.


2. VWF activity (ristocetin cofactor activity) test.


3. Factor VIII clotting activity.


4. Multimer analysis (to identify the specific type of the disease).

What are the red flags requiring urgent care?

While many people live with undiagnosed, mild Von Willebrand Disease, certain symptoms require immediate medical attention. Seek emergency care if you experience: unexplained internal bleeding (such as blood in the stool or urine), severe headaches following a head injury, or any bleeding that is profuse and cannot be controlled with direct pressure. These signs could indicate a severe bleeding episode or a complication of the condition.

How do I advocate for myself if my concerns are dismissed?

It is not uncommon for patients with the mildest forms of Von Willebrand Disease to be told their symptoms are "normal." If you feel your concerns are being minimized, request a referral to a hematologist, specifically one who specializes in bleeding disorders. Bring your symptom diary and any family medical history you have gathered. Remember, the 184 members of the DiseaseMaps community who live with Von Willebrand Disease have often had to advocate for themselves to reach a diagnosis; you are your own best health advocate.

Next steps

• Consult a hematologist for specialized coagulation testing.


• Document your bleeding history, including duration and intensity of events.


• Gather family health history regarding unexplained bleeding or surgeries.


• Join the DiseaseMaps.org community to connect with others sharing their experiences with Von Willebrand Disease.

Medical Disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment; always consult with a qualified healthcare provider regarding your health concerns.

References

• NIH Genetic and Rare Diseases Information Center (GARD): Von Willebrand Disease.


• Orphanet: Rare Disease Database (ORPHA:900).


• National Hemophilia Foundation (NHF): VWD Diagnosis and Management Guidelines.


• OMIM (Online Mendelian Inheritance in Man): Von Willebrand Factor (VWF) entry #193400.