Living with Progressive bifocal chorioretinal atrophy
An inherited eye condition with wasting in the center of the retina, shaky eye movements, nearsightedness and poor vision that worsens slowly.
Understanding Progressive bifocal chorioretinal atrophy
Other features include fast, uncontrollable eye movements (nystagmus), nearsightedness (myopia) and poor vision. It begins at birth or in infancy and progresses slowly. Rod and cone cells, which sense light, are affected throughout the retina.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Poor vision
- Wasting of the macula (center of the retina)
- Nearsightedness
- Fast, uncontrollable eye movements (nystagmus)
- Inward-turning eyes
- Retinal changes near the nose side
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
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 Macular Degeneration 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 it is caused by changes in a gene located in a region on chromosome 6q, close to the MCDR1 locus. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: crapb; pbcra
Patient organizations
- Macular Degeneration FoundationProgressive bifocal chorioretinal atrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Progressive bifocal chorioretinal atrophy.
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