Living with IRVAN syndrome
A rare eye disease with inflamed retinal blood vessels, bulges in small arteries, and swelling of the optic nerve and retina that can affect vision.
Understanding IRVAN syndrome
The name stands for idiopathic retinal vasculitis, aneurysmal dilations, and neuroretinitis. Vessels in the retina become inflamed and have bulges (aneurysms). Without treatment, it can progress to poor blood flow in the outer retina, new abnormal vessels, and fluid leakage in the macula, leading to serious vision loss in both eyes. It can start from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Less clear vision
- Eye floaters
- High eye pressure (ocular hypertension)
- Blurred vision
- Sensitivity to light
- Glaucoma
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. Its name says the vessel inflammation is idiopathic, which means no cause has been found.
Also known as: idiopathic retinal vasculitis-aneurysms-neuroretinitis syndrome; idiopathic retinal vasculitis, aneurysms, neuroretinitis syndrome; irvan (idiopathic retinal vasculitis, aneurysms, neuroretinitis) syndrome
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 IRVAN syndrome.
Explore research for IRVAN syndrome
Explore actively recruiting IRVAN syndrome studies with HealthSpark.
Find actively recruiting studies for IRVAN syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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