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Educational content only
This page is general patient education, not medical advice. It does not diagnose conditions, recommend specific treatments for you, or replace a conversation with your eye care provider. Always consult a qualified clinician before making decisions about your eye health.
Retinitis pigmentosa is a group of inherited retinal conditions that slowly damage the light-sensing cells of the eye. Treatment is evolving rapidly with gene therapy.
What helps
Here's the plan — and why it works.
Diagnostic
Genetic testing
Identifying the specific gene mutation guides prognosis, qualifies you for gene-specific clinical trials, and helps family members make informed decisions.
Gene therapy
Luxturna (RPE65 mutations)
FDA-approved for biallelic RPE65 mutations — a small subset of RP. Single-treatment retinal injection that can durably improve vision in qualifying patients.
Adaptive
Low-vision rehabilitation
Magnifiers, special lighting, mobility training, and adaptive technology dramatically improve daily life. Early connection with a low-vision specialist is valuable.
Trials
Clinical trials
Gene-replacement, optogenetic, and stem-cell trials are active across many RP-associated genes. Genetic diagnosis is the entry point — talk with a retina specialist about options.
Come in regularly
Schedule annual exams to monitor the field of vision, watch for treatable complications (cataracts and macular edema are more common in RP), and stay current on emerging trials.
Common questions
Honest answers to common questions.
Will I go completely blind?+
Most people with RP don't become totally blind. Many retain some central vision into late adulthood. The pace and severity vary widely depending on the specific gene mutation.
What's the youngest age it shows up?+
Some forms (Leber congenital amaurosis) cause severe visual impairment from birth. Most adult-onset RP becomes symptomatic between ages 10 and 40.
Should my kids be tested?+
If the inheritance pattern is known, genetic counseling can clarify their risk. Many forms of RP have predictable inheritance; testing children depends on whether the result would change their management.
Is gene therapy available for me?+
Currently FDA-approved gene therapy treats biallelic RPE65 mutations only. Trials for other genes are ongoing — your retina specialist can help identify whether your specific mutation is being studied.
Can supplements help?+
Vitamin A palmitate has been studied for some forms of RP. Evidence is mixed and high-dose vitamin A has risks — discuss with your retina specialist before starting any supplement.