Rare eye condition
Retinitis pigmentosa
Retinitis pigmentosa (RP) is a group of inherited retinal diseases in which the light-sensing rod and cone cells gradually stop working, typically causing night blindness first and then narrowing side vision.
Key points
The essentials at a glance.
What to look out for, how the diagnosis is confirmed, who looks after it, and the options that exist.
-
01
Early signs are difficulty seeing in dim light and bumping into things at the edges of vision; central vision is usually affected last.
-
02
RP is genetic - more than 80 genes are known - and the pattern of inheritance affects the risk to relatives.
-
03
Diagnosis combines detailed retinal imaging, electroretinography (ERG) and genetic testing through the NHS Genomic Medicine Service.
-
04
Specialist inherited retinal disease (IRD) clinics coordinate genetic counselling, registration for sight impairment and access to research trials.
-
05
One gene therapy (voretigene neparvovec) is approved for RPE65-related disease; many other therapies are in trials.
Understanding it
What it is, and what happens next.
In plain English - what is going on, how specialists confirm it, and the routes to treatment in the UK.
In retinitis pigmentosa the photoreceptor cells of the retina degenerate over years to decades. Because rods fail first, the earliest symptoms are usually poor night vision and a slowly shrinking visual field, often noticed in the teens or twenties, though onset varies widely with the gene involved. Progression is highly variable, and many people retain useful central vision for decades.
Confirming the diagnosis matters more than ever because treatment now depends on the exact gene: assessment in a specialist inherited retinal disease clinic includes ERG, OCT and autofluorescence imaging, plus panel-based genetic testing, which identifies the responsible gene in the majority of families and opens the door to genetic counselling, trial eligibility and, for RPE65 disease, approved gene therapy. In many parts of the UK, routine NHS outpatient referrals for problems like this can take several months, whereas an initial appointment with a private consultant is typically available within around two weeks.
A quiet reminder
This guide is for information, not medical advice.
Your GP or specialist knows your history and can tell you which parts apply to you. If in doubt, speak to them.
Published 2026-09-27 · Next review 2027-09-27
Frequently asked
Common questions about Retinitis pigmentosa.
Quick, plain-English answers to what people ask us most.
-
What is retinitis pigmentosa?
Retinitis pigmentosa (RP) is a group of inherited retinal diseases in which the light-sensing rod and cone cells gradually stop working, typically causing night blindness first, followed by progressive loss of peripheral and eventually central vision.
-
What causes retinitis pigmentosa?
RP is caused by mutations in any of a large number of genes involved in the function of retinal photoreceptor cells, inherited in various patterns depending on the specific gene involved, and can run in families or occur without a known family history.
-
What are the symptoms of retinitis pigmentosa?
Symptoms typically begin with night blindness and difficulty adjusting to dim light, progressing gradually over years to loss of peripheral vision (tunnel vision) and, eventually, central vision in more advanced cases.
-
Is retinitis pigmentosa curable?
There is no cure for most forms, though gene therapy is now available for a small number of specific genetic causes, and research into new treatments is progressing steadily, making genetic diagnosis increasingly valuable.
-
How is retinitis pigmentosa diagnosed?
Diagnosis involves specialist retinal examination, electrophysiology testing to measure the retina's electrical response to light, and genetic testing to identify the specific gene involved.
-
How is retinitis pigmentosa managed?
Management includes low vision support and rehabilitation, monitoring for treatable complications such as cataracts or swelling, genetic counselling for family planning, and for a growing number of specific genetic types, targeted gene therapy.
-
Retinitis pigmentosa vs age-related vision loss - what's the difference?
Retinitis pigmentosa is a genetic condition typically presenting from childhood or early adulthood with a specific pattern of night blindness and peripheral vision loss, whereas age-related vision loss develops later in life from different causes such as macular degeneration.
-
When should I see a specialist about retinitis pigmentosa?
See a doctor for unexplained night vision problems or a family history of RP, so referral to a specialist inherited eye disease clinic can be arranged. A private ophthalmologist can typically be seen within about two weeks.