How is von Willebrand disease diagnosed?

Your doctor will determine if you have von Willebrand disease (VWD) by assessing your history of bleeds and running a series of blood tests.1

Severity can impact diagnosis

People with severe VWD often have symptoms while they're babies and might be diagnosed early on, but in milder cases, VWD often isn't diagnosed until adulthood. An accurate diagnosis is extremely important for women in order to avoid unnecessary and/or invasive treatments, such as hysterectomy.2,3

There are guidelines for the diagnosis and management of VWD. Your healthcare team will be familiar with these guidelines and you can read them too. They are intended to support patients, clinicians, and other healthcare professionals in their decisions about VWD diagnosis.3

The guidelines were developed by leading national and international research groups. The groups were the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH).3

See the summary of the guidelines for diagnosis of VWD:

Get the VWD diagnosis guidelines
Doctor treating a patient.

If your doctor thinks you may have VWD, they will likely:

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Ask about your experience with excessive bleeding or bruising1

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Research whether you have a family history of bleeding1

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Give you a physical exam1

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Run tests such as a complete blood count, VWF antigen test, and a factor VIII clotting activity test4

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Check for signs of other conditions such as liver disease or lupus5

See the summary of the guidelines for management of VWD.

Keep exploring

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Treatment options for von Willebrand disease

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Doctor going through a checklist with the patient.

Talking to your doctor about VWD

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Connect with a Community Education Specialist

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  1. Centers for Disease Control and Prevention. What is von Willebrand disease? http://www.cdc.gov/ncbddd/vwd/facts.html. Accessed February 12, 2023.
  2. Canadian Hemophilia Society. All about von Willebrand disease…for people with von Willebrand disease and their families. http://www.hemophilia.ca/files/AllAboutVWDRevisedEng.pdf. Accessed February 12, 2023.
  3. James PD, Connell NT, Ameer B, et al. ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease. Blood Adv. 2021;5(1):280-300. doi:10.1182/bloodadvances.2020003265
  4. Centers for Disease Control and Prevention. von Willebrand Disease (VWD) Diagnosis. https://www.cdc.gov/ncbddd/vwd/diagnosis.html. Accessed February 16, 2023.
  5. National Institutes of Health. Bleeding disorders. Diagnosis. https://www.nhlbi.nih.gov/health/bleeding-disorders/diagnosis. Accessed February 16, 2023.