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, causing 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.
There’s no cure for RP. But vision aids and rehabilitation (training) programs can help people with RP make the most of their vision.
What are the symptoms of RP?
The most common early symptom of RP is loss of night vision — usually starting in childhood. Parents may notice that children with RP have trouble moving around in the dark or adjusting to dim light.
RP also causes loss of side (peripheral) vision — so you have trouble seeing things out of the corners of your eyes. Over time, your field of vision narrows until you only have some central vision (also called tunnel vision).
Some people with RP lose their vision more quickly than others. Eventually, most people with RP lose their side vision and their central vision.
Other symptoms of RP include:
- Sensitivity to bright light
- Loss of color vision
What causes RP?
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.
RP is linked to many different genes and can be inherited in different ways. If you have RP, you can talk with your doctor or a specialist called a genetic counselor to learn more about your risk of passing RP to your children.
Sometimes RP happens as part of other genetic conditions, like Usher syndrome. Usher syndrome causes both vision and hearing loss.
RP can also be caused by some medicines, infections, or by an eye injury — but these causes aren’t as common.
How will my eye doctor check for RP?
Eye doctors can check for RP as part of a comprehensive dilated eye exam. The exam is simple and painless — the doctor will give you some eye drops to dilate (widen) your pupil and then check your eyes for RP and other eye problems. The exam includes a visual field test to check peripheral (side) vision.
Other tests for RP include:
- Electroretinography (ERG). ERG lets the eye doctor check how well your retina responds to light.
- Optical coherence tomography (OCT). This test uses light waves to take a detailed picture of your retina.
- Fundus autofluorescence (FAF) imaging. In this test, the eye doctor uses blue light to take a picture of the retina.
- Genetic testing. Your doctor may suggest a genetic test to learn more about the type of RP they have. This can tell you how your RP symptoms may change over time.
What’s the treatment for RP?
There’s no cure for RP, but low vision aids and rehabilitation (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 for RP. Vitamin A may help slow vision loss from the common forms of RP. But taking too much vitamin A can cause liver problems — so talk with your doctor about the risks and benefits of this treatment. Fish oil and lutein supplements may also help slow vision loss.
Get regular eye exams
It’s very important for people with RP to get regular eye exams. That way, the eye doctor can keep track of symptoms and help find the right treatments.
People with RP are also more likely to have other eye problems, like:
- Refractive errors
- Small pockets of fluid in the center part of the retina (cystoid macular edema)
Regular eye exams can help your eye doctor find and treat these problems them early on. This will help you make the most of your vision.
What’s the latest research on RP?
NEI funds research about RP and other genetic eye diseases with the goal of preventing vision loss and giving people their sight back. Currently, NEI researchers are studying gene therapies, cell therapies, and new medications as experimental treatments that may become standard treatments in the future.
To find current studies on RP, you can search for clinical trials on ClinicalTrials.gov.