Living with Wyburn-Mason syndrome
A condition present from birth in which blood vessels form abnormally in the retina of one eye and part of the brain.
Understanding Wyburn-Mason syndrome
These tangles are called arteriovenous malformations (AVMs). The condition is present from birth. People may have extra AVMs elsewhere, especially on the face. Symptoms depend on the size, location, and shape of the AVMs, and some people have none.
Signs & symptoms
Some people have no symptoms. GARD lists these possible symptoms:
- Headaches
- Vision problems
- Seizures
- Weakness on one side of the body (hemiparesis)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 The Aneurysm and AVM 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
GARD says the cause is unknown. The condition is present from birth.
Also known as: bonnet-dechaume-blanc syndrome; cams2; cerebral-retinal arteriovenous aneurysm; cerebrofacial arteriovenous metameric syndrome type 2; wyburn-mason's syndrome
Patient organizations
- The Aneurysm and AVM FoundationWyburn-Mason syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Wyburn-Mason syndrome.
Explore research for Wyburn-Mason syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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