National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Acquired Von Willebrand syndrome


Other Names:
Willebrand disease, acquired; Acquired Von Willebrand disease
Categories:
Acquired von Willebrand syndrome (AVWS) is a bleeding disorder that can occur due to a variety of conditions, but is not caused by a VWF gene mutation. It is most often seen in persons over age 40 years with no prior bleeding history. This condition may result from lymphoproliferative disorders, autoimmune disorders (including systemic lupus erythrematosus, scleroderma, and antiphospholipid antibody syndrome), heart conditions such as aortic valvular stenosis, increased blood platelet count such as essential thrombocythemia, and certain drugs.[1] About 300 cases of this condition have been reported in the medical literature thus far. Treatment depends on the underlying cause of the condition.[2]
Last updated: 9/15/2011

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

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Medical Terms Other Names
Learn More:
HPO ID
30%-79% of people have these symptoms
Abnormality of cardiovascular system morphology 0030680
Hematological neoplasm 0004377
Impaired ristocetin cofactor assay activity 0030129
Prolonged prothrombin time 0008151
Reduced factor VIII activity 0003125
Reduced von Willebrand factor activity 0008330
5%-29% of people have these symptoms
Aortic regurgitation 0001659
Aortic valve stenosis
Narrowing of aortic valve
0001650
Asthenia 0025406
Bruising susceptibility
Bruise easily
Easy bruisability
Easy bruising
[ more ] 		0000978
Epistaxis
Bloody nose
Frequent nosebleeds
Nose bleed
Nose bleeding
Nosebleed
[ more ] 		0000421
Gastrointestinal angiodysplasia 0000471
Hematuria
Blood in urine
0000790
Hypochromic anemia 0001931
Hypotension
Low blood pressure
0002615
Joint hemorrhage
Bleeding within a joint
Hemarthrosis
[ more ] 		0005261
Melena 0002249
Menorrhagia
Abnormally heavy bleeding during menstruation
0000132
Metrorrhagia
Abnormal uterus bleeding
0100608
Mitral regurgitation 0001653
Normocytic anemia 0001897
Persistent bleeding after trauma
Excessive bleeding after minor trauma
Frequent bleeding with trauma
Prolonged bleeding after minor trauma
[ more ] 		0001934
Pulmonic stenosis
Narrowing of pulmonic valve
0001642
Refractory anemia 0005505
1%-4% of people have these symptoms
Intracranial hemorrhage
Bleeding within the skull
0002170
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Last updated: 7/1/2020

The resources below provide information about treatment options for this condition. If you have questions about which treatment is right for you, talk to your healthcare professional.

Management Guidelines

  • The National Hemophilia Foundation Web site posts the guidelines for management of pregnancy and delivery of women with bleeding disorders and carriers of hemophilia A and B. Click on the link to view the guidelines.

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Acquired Von Willebrand syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • Genetics Home Reference (GHR) contains information on Acquired Von Willebrand syndrome. This website is maintained by the National Library of Medicine.

In-Depth Information

  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Acquired Von Willebrand syndrome. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

  1. Goodeve A & James P. von Willebrand Disease. GeneReviews. 2014; http://www.ncbi.nlm.nih.gov/books/NBK7014/#von-willebrand.Differential_Diagnosis.
  2. Acquired Von Willebrand syndrome. Orphanet. October 2008; http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=99147. Accessed 9/15/2011.