Retinitis pigmentosa

Retinitis pigmentosa (RP) is the name given to a group of inherited eye conditions that affect the retina at the back of the eye. RP causes permanent changes to your vision, but how much and how quickly varies from person to person.

Although there’s no cure for RP there are plenty of ways that you can adapt to maximise the vision you have and continue doing the things you enjoy.

Our Understanding Retinitis Pigmentosa guide is accredited by the Royal College of Ophthalmologists, and is designed to give you a detailed understanding of your eye condition and helpful advice on next steps.

Download our full guide on retinitis pigmentosa as a PDF (1.3MB)

You can also download our full guide on retinitis pigmentosa as a Word document (30KB)

Living with retinitis pigmentosa

Living with RP - Dave's story video transcript (Word, 169KB)

Living with RP - Anna's story video transcript (Word, 169KB)

Causes of retinitis pigmentosa

Almost all types of retinitis pigmentosa (RP) are inherited, caused by a fault in the genetic information passed down to you from a parent. The faulty genes cause your retinal cells to stop working and eventually die. This affects your eye’s ability to process the light that enters it.

Because there are many genes that can cause the retinal cells to stop working, there are many different types of RP.

You can read a more detailed breakdown of the genetic causes of RP in our Understanding Retinitis Pigmentosa guide.

Symptoms

For most people with RP, the early symptoms include:

Difficulty seeing in poor light such as outdoors at dusk or in a dimly lit room. It’s normal for eyes to take up to 20 minutes to adapt to dim light but if you have RP it will take much longer or won’t happen at all. This is often called "night blindness".
Loss of peripheral vision if you look straight ahead you’ll be less able to see things to the side, above or below. This can lead to ‘"tunnel vision".

Less commonly,in some cases of RP, people can experience:

Loss of central vision you might find it difficult reading print or carrying out detailed work

If you notice any of these symptoms for the first time, it’s important to have your eyes examined by an optometrist (optician).

Diagnosis

An optometrist can examine your retina to detect RP.

If you have a family history of RP or have noticed any of the symptoms associated with the condition you need to make this clear to the person testing your eyes. This will help them carry out the best set of tests.

If the optometrist detects any changes in your retina which may be RP, they will refer you to an ophthalmologist ( hospital eye doctor) for more detailed testing. This may involve genetic testing and discussing any family history of RP.

There’s more information on the different types of test that can be carried out to detect RP in our Understanding Retinitis Pigmentosa guide.

Treatment

Although there’s currently no known cure or treatment for RP, you’ll still be monitored regularly at the hospital eye clinic.

Many of the genes causing RP and related conditions are being discovered (or mapped) and it’s this understanding of where the faults occur in the genetic information that might lead to treatment in the future.

Despite this there’s a lot that we can do to help you make the most of the vision you do have and continue doing the things that you enjoy.

Recently diagnosed with retinitis pigmentosa

Trying to adjust after a diagnosis of RP can seem overwhelming at first, and it might involve some changes to your life. We’re here to support you every step of the way – just give our Helpline a call.

You might also find it helpful to talk to our Eye Health team about your eye condition, get support from our Sight Loss Counselling service, or find out how to register as sight impaired.

Below are some guides that may be useful:

Getting emotional support

Benefits, concessions and registration

For information about Northern Ireland please download our Benefits, Concessions and Certification in Northern Ireland leaflet:

Benefits, Concessions and Certification in Northern Ireland (Word, 44KB)

Staying in work

Knowing RNIB is there is so reassuring, like a comfort blanket
Peter Seaman

You can get support with your eye condition with RNIB

Living confidently with retinitis pigmentosa

Living with RP shouldn’t mean an end to doing most of the things you like to do. You can contact our Helpline for support, or start by reading our guides on making the most of your sight and enjoying leisure when living with sight loss.

Making the most of your sight

Leisure pursuits when you have sight loss

If you haven’t already, why not join RNIB Connect and get connected to other people affected by sight loss locally and across the country? Or try our free Talking Books service to enjoy reading in an accessible format, or tune into RNIB Connect Radio to hear news, information and advice for people affected by sight loss.