Living with Acquired von willebrand syndrome
A bleeding disorder that develops in adults due to other conditions or medicines, not an inherited gene change.
Understanding Acquired von willebrand syndrome
It can result from lymphoproliferative disorders, autoimmune disorders (such as lupus, scleroderma, or antiphospholipid antibody syndrome), heart conditions such as aortic valve narrowing, high platelet counts, and certain drugs. GARD lists onset as adult.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low von Willebrand factor activity
- Low factor VIII activity
- Longer time for blood to clot
- Heavy menstrual bleeding
- Bleeding under the skin
- Bleeding within a joint
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Hemophilia Federation of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists)
- Expert care
- Expert lists: Hemophilia Federation of America
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Hemophilia Federation of America and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is not caused by a VWF gene change. It can result from conditions such as lymphoproliferative or autoimmune disorders, heart conditions, high platelet counts, and certain drugs.
Also known as: acquired von willebrand disease; acquired von willebrand disease (hereditary or acquired); acquired von willebrand's disease; avws
Patient organizations
- Hemophilia Federation of AmericaAcquired von willebrand syndrome · United States
- National Bleeding Disorders FoundationAcquired von willebrand syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Acquired von willebrand syndrome.
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