Living with Benign concentric annular macular dystrophy
A genetic eye condition that slowly affects the center of the retina and can cause night and side vision loss.
Understanding Benign concentric annular macular dystrophy
It starts with a pale ring near the center of the retina. This is followed by trouble seeing at night (nyctalopia) and loss of side vision, similar to retinitis pigmentosa. The retina has a bull's eye look. It begins in childhood.
Signs & symptoms
GARD describes these vision changes:
- Trouble seeing at night (nyctalopia)
- Loss of side (peripheral) vision
- Pale ring near the center of the retina
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 IMPG1 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
Changes in the IMPG1 gene cause this condition. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: retinitis pigmentosa 91
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 Benign concentric annular macular dystrophy.
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