Living with Pigmented paravenous retinochoroidal atrophy
A rare inherited eye condition with changes along the veins of the retina that often causes few or no symptoms.
Understanding Pigmented paravenous retinochoroidal atrophy
It usually affects both eyes in a similar way. Doctors see thinning of the retina and the tissue beneath it, and dark pigment along the retinal veins. GARD says it does not progress or progresses slowly. It is usually without symptoms, but some people have mild blurred vision. It can begin at any time in life.
Signs & symptoms
Many people have no symptoms. GARD describes this:
- Often no symptoms
- Mild blurred vision
- Dark pigment along the retinal veins
- Thinning of the retina and layer beneath it
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 CRB1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Foundation Fighting Blindness may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Foundation Fighting Blindness
- 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 Foundation Fighting Blindness and other patient organizations
- 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 CRB1 gene are linked to this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: pigmented paravenous chorioretinal atrophy; pprca; pprca - pigmented paravenous retinochoroidal atrophy
Patient organizations
- Foundation Fighting BlindnessPigmented paravenous retinochoroidal atrophy · United States
- Curing Retinal Blindness FoundationPigmented paravenous retinochoroidal atrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Pigmented paravenous retinochoroidal atrophy.
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