Living with Autosomal dominant neovascular inflammatory vitreoretinopathy
A genetic eye condition that slowly damages the retina and can lead to vision loss.
Understanding Autosomal dominant neovascular inflammatory vitreoretinopathy
This condition usually starts in the second or third decade of life. It often begins as swelling inside the eye from an immune reaction (autoimmune uveitis). Over time, it can cause bleeding in the eye, new abnormal blood vessels, scarring, high eye pressure (glaucoma), and retinal detachment. In later stages it can lead to complete blindness.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swelling inside the eye (uveitis)
- Abnormal eye test results (electroretinogram)
- Large dark spots on the retina
- New abnormal blood vessels in the retina
- Bleeding in the eye gel (vitreous hemorrhage)
- Retinal detachment
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 eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in CAPN5 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
- Eye disease specialists (ophthalmologists); 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 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
This condition is caused by changes in the CAPN5 gene. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: adniv; capn5 vitreoretinopathy; capn5-related vitreoretinopathy; retinitis proliferans; vitreoretinopathy, neovascular inflammatory; vitreoretinopathy, neovascular inflammatory, autosomal dominant
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 Autosomal dominant neovascular inflammatory vitreoretinopathy.
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