Living with Congenital retinal arteriovenous communication
A rare eye vessel condition in which arteries and veins in the retina connect directly, usually in one eye.
Understanding Congenital retinal arteriovenous communication
It usually affects one eye. Some people have no symptoms, while others lose some vision. Complications can include blocked vessels or bleeding in the retina or the jelly inside the eye (vitreous). It can occur alone or as part of Wyburn-Mason syndrome, which also involves blood vessel malformations in the brain.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions these:
- No symptoms in some people
- Vision loss that varies
- Blocked blood vessels in the eye
- Bleeding in the retina or vitreous
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 brain and nervous system specialists and eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists)
- 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 rare disease patient organizations for support
- 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 doesn't describe a cause for this condition yet.
Also known as: congenital arteriovenous anastomoses of the retina; congenital arteriovenous communication of the retina; congenital arteriovenous malformation of retina; congenital racemose hemangioma of retina; congenital retinal arteriovenous anastomoses; retinal arteriovenous anomaly
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital retinal arteriovenous communication.
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