Living with Retinitis pigmentosa
A group of inherited eye conditions that slowly reduce vision, usually starting with trouble seeing at night.
Understanding Retinitis pigmentosa
The first sign is usually trouble with night vision, often in childhood. Later, blind spots develop in side vision and can merge into tunnel vision. Over years or decades, central vision can be affected. Usually the signs are limited to vision, but it can be part of syndromes such as Usher syndrome, which also includes hearing loss.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Night blindness (nyctalopia)
- Loss of side vision
- Extreme sensitivity to light (photophobia)
- Involuntary eye movements (nystagmus)
- Abnormal retina pigment
- Fluid-related swelling in the macula (cystoid macular edema)
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, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation Fighting Blindness may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 genes cause retinitis pigmentosa. It can be autosomal dominant, autosomal recessive, or X-linked, and the type is often named by the inheritance pattern.
Also known as: rp; rp - retinitis pigmentosa; tapetoretinal degeneration
Patient organizations
- Foundation Fighting BlindnessRetinitis pigmentosa · United States
- Curing Retinal Blindness FoundationRetinitis pigmentosa · United States
- Prevent Blindness AmericaRetinitis pigmentosa · United States
You are more than your diagnosis
Perspectives from people navigating life with Retinitis pigmentosa.
Explore research for Retinitis pigmentosa
Explore actively recruiting Retinitis pigmentosa studies with HealthSpark.
Find actively recruiting studies for Retinitis pigmentosa with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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