Retinitis Pigmentosa: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Retinitis Pigmentosa?
An eye doctor, called an ophthalmologist, checks for and manages retinitis pigmentosa. A genetic counselor, a specialist who explains inherited risk, can help families understand the chance of passing it on. Eye doctors can check for it during a dilated eye exam. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is retinitis pigmentosa?
Retinitis pigmentosa (RP) is a group of rare eye diseases that affect the retina, the light-sensitive layer of tissue in the back of the eye. RP makes cells in the retina break down slowly over time, which causes vision loss.
RP is a genetic disease that people are born with. Symptoms usually start in childhood, and most people eventually lose most of their sight. It is the most common inherited disease of the retina. It is estimated to affect 1 in 3,500 to 1 in 4,000 people in the United States and Europe.
Symptoms
The first sign is usually loss of night vision, often starting in childhood. Parents may notice that a child has trouble moving around in the dark or adjusting to dim light. Other symptoms include:
- Loss of side vision, so it is hard to see things out of the corners of your eyes.
- A field of vision that narrows over time until only some central vision is left, called tunnel vision.
- Sensitivity to bright light.
- Loss of color vision.
Some people lose their vision more quickly than others. Eventually, most people with RP lose their side vision and their central vision.
Causes and who gets it
Most of the time, RP is caused by changes in genes that control cells in the retina. These changed genes are passed down from parents to children. More than 130 genes are known to cause RP.
The retina has two kinds of light-sensing cells, called rods and cones. Rods work in low light and break down first, which is why night vision problems come first.
RP can be inherited in different ways. In some families one changed gene copy is enough to cause it. In others a child needs a changed copy from each parent. Less often it is passed down on the X chromosome.
In 20 to 30 percent of cases, RP is part of a syndrome that affects other parts of the body. The most common is Usher syndrome, which combines RP with hearing loss that begins early in life. RP can also be caused by some medicines, infections, or an eye injury, but these causes are less common.
How doctors diagnose it
An eye doctor can check for RP as part of a dilated eye exam. You get drops that widen the pupil. The exam is simple and painless and includes a visual field test to check side vision.
Other tests include electroretinography (ERG), which checks how well the retina responds to light, and optical coherence tomography (OCT), which uses light waves to take a detailed picture of the retina. The doctor may also suggest a genetic test to learn more about the type of RP.
Treatment
There is no cure for RP. Low vision aids and rehabilitation programs, which are training programs, can help people with RP make the most of their vision.
You can also talk with your eye doctor about vitamins and supplements. Vitamin A may help slow vision loss from the common forms of RP. But too much vitamin A can cause liver problems, so talk with your doctor about the risks and benefits. Fish oil and lutein supplements may also help slow vision loss.
A gene therapy called Luxturna is approved by the FDA specifically for RP caused by changes in the RPE65 gene.
People with RP should get regular eye exams. They are also more likely to have other eye problems, such as cataracts.
When to see a doctor
Parents who notice that a child has trouble moving around in the dark or adjusting to dim light should talk with an eye doctor. Anyone with loss of night vision or side vision should have an eye exam.
If you already have RP, regular eye exams let your eye doctor keep track of your symptoms and help find the right treatments.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. This kind of doctor can help you find an eye doctor, keep up with follow-up visits, and coordinate care with specialists such as a genetic counselor.
Common questions
Is there a cure for retinitis pigmentosa?
No, there is no cure for RP. Low vision aids and rehabilitation programs can help people make the most of their vision. A gene therapy is approved specifically for RP caused by changes in the RPE65 gene.
Will I go blind from retinitis pigmentosa?
Most people with RP eventually lose their side vision and their central vision, but it happens at different speeds. Regular eye exams help your eye doctor track changes.
Is retinitis pigmentosa inherited?
Yes, RP is a genetic disease. Most of the time it is caused by changed genes that are passed down from parents to children. A genetic counselor can explain your family's risk.
What is the first sign of retinitis pigmentosa?
The first sign is usually loss of night vision, often starting in childhood. Parents may notice that a child has trouble moving around in the dark or adjusting to dim light.
Sources
- National Eye Institute - Retinitis Pigmentosa
- MedlinePlus Genetics - Retinitis pigmentosa
- National Organization for Rare Disorders (NORD) - Retinitis Pigmentosa
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
