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Congenital Von Willebrand Disease

Medically reviewed by Last updated on Apr 2, 2024.

What is congenital von Willebrand disease (CVWD)?

CVWD is an inherited blood disorder that causes heavy bleeding or bleeding that will not stop. CVWD is present at birth.

What causes or increases my risk for CVWD?

CVWD is caused by a change in the gene that makes von Willebrand factor (VWF). VWF is a protein that helps blood clot. You may not have enough VWF, or it may not work correctly. If one of your parents has von Willebrand disease, you have a 50 percent chance of getting the mild form. If both parents carry the gene, you may get the severe form, or you may not get it at all. The chance of having the mild form is also higher if both of your parents carry the gene.

What are the signs and symptoms of CVWD?

How is CVWD diagnosed?

Your healthcare provider will ask about your medical history and the details of your bleeding episodes. Tell your provider if other family members have CVWD or other bleeding problems. You will have blood tests to check VWF, platelets, and other clotting factors.

How is CVWD treated?

CVWD cannot be cured. The goal of treatment is to prevent and control bleeding. You may need any of the following:

What can I do to manage a bleeding episode?

What can I do to prevent bleeding episodes?

Call your local emergency number (911 in the US) if:

When should I seek immediate care?

When should I call my doctor?

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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