Living with Pseudo von Willebrand disease
A bleeding disorder with mild to moderate bleeding from skin and mucous membranes, caused by overactive platelets.
Understanding Pseudo von Willebrand disease
It causes mild to moderate bleeding from the skin and linings of the body, like the nose and mouth. Bleeding gets worse during pregnancy or after taking medicines that affect platelets. GARD lists onset in adulthood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes these features:
- Mild to moderate bleeding from the skin and body linings
- More bleeding during pregnancy
- More bleeding with medicines that affect platelets
- Low platelet count (thrombocytopenia)
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 and genetic specialists.
- 3Consider genetic testing
Changes in GP1BA are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 National Bleeding Disorders Foundation
- 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
This condition is caused by changes in the GP1BA gene. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: bdplt3; bleeding disorder, platelet-type, 3; platelet type pseudo-von willebrand disease; platelet type-von willebrand disease; platelet-type von willebrand disease; pseudo-von willebrand disease
Patient organizations
- National Bleeding Disorders FoundationPseudo von Willebrand disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Pseudo von Willebrand disease.
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