A guide to living
a full life with
Retinitis Pigmentosa
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.
Latest RP Research & News
FAQ about RP
Retinitis Pigmentosa quick answers
As RP affects the retinal rod cells first, the first symptom you’ll notice is that you don’t see as well as people without a sight condition in dim light, such as outside at dusk, or at night. This is often called “night blindness”. People without a sight condition can usually fully adapt to dim light in 15 to 30 minutes, but if you have RP, it will either take you much longer or it won’t happen at all. You’ll start having problems seeing things in your peripheral vision. You may miss things to either side of you and you might trip over or bump into things that you would have seen in the past. As your RP progresses, you’ll gradually lose more of your peripheral sight, leaving a central narrow field of vision, often referred to as having “tunnel vision”. How long your central vision is preserved will depend on the type of RP that you have. This may be into your 50s or beyond. However, advanced RP will often affect your central vision, so that reading or recognising faces becomes difficult. RP is a progressive condition, which means that your sight will continue to get worse over the years. Often, after your vision has been stable for a while, it can get worse suddenly over a short period of time. This new level of vision may then remain stable for quite some time. However, there may be further changes to your vision in the future. This may mean that you have to keep re-adapting to lower levels of sight. The type of RP that you have can affect how quickly these changes develop.
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
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. Learn more about Usher syndrome RP can also be caused by some medicines, infections, or by an eye injury — but these causes aren’t as common.
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. Learn what to expect from a dilated eye exam 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.
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.
Many charities fund research about RP and other genetic eye diseases with the goal of preventing vision loss and giving people their sight back. Currently, researchers are studying gene therapies, cell therapies, and new medications as experimental treatments that may become standard treatments in the future.
A person with advanced retinitis pigmentosa may benefit from a low vision assessment to evaluate their needs – such as low-vision aids to help maximize their remaining sight and assistive technologies like text-to-speech computer programmes. If someone in your family is affected with RP, you can access genetic testing along with support from a genetic counsellor. As well as helping you to make informed medical and personal decisions, a genetic diagnosis will also provide up-to-date information about potentially suitable new treatments that are in development. Have your eyes tested every two years even if you think your vision is fine. An eye test can spot some eye conditions and, if caught early, treatment may prevent further deterioration.
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 errorsThis link is external to nei.nih.gov and will open in a new browser window or tab. CataractsThis link is external to nei.nih.gov and will open in a new browser window or tab. 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.
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