Living with retinitis pigmentosa

Retinitis pigmentosa (RP) is a fairly rare eye disease, affecting around one in every 4,000 people worldwide (Source: OJRD). 

If you're living with retinitis pigmentosa, it’s likely you’ll develop a visual impairment that impacts daily life. It’s natural to be worried, but there is plenty of support for you and your family to help you as your vision changes.

The effects of RP can begin in childhood, so it helps to get the right support in place as early as possible.

Managing life with retinitis pigmentosa

Although there’s currently no treatment for retinitis pigmentosa, you can get help to manage your condition and adapt to progressive loss of vision over time. 

Children and adults living with retinitis pigmentosa will need to see their eye doctor for regular check-ups to monitor the condition as it progresses. Your doctor can also help you manage the condition and get support, for example, by referring you to a low vision clinic.

Practical tips for making the most of your vision

One of the earliest symptoms is ‘night blindness’ (difficulty seeing in poor light) and loss of peripheral vision (side vision) that we rely on for moving about. This loss of peripheral vision can eventually lead to tunnel vision. After many years, possibly decades, RP can also affect the central vision that gives us the visual acuity we use for seeing details, for example, when reading and recognising faces. 

At every stage of your experience with RP, there are ways to make the most of your useful vision. Your ophthalmologist will be able to refer you for a low vision assessment (LVA) that can help find what’s best for you. You should have a team of people around you, such as occupational therapists and mobility specialists, to help find the aids, support and services you need. Local social services can also advise on getting around safely and offer practical support for managing at home.

 Practical ways to make life with RP easier include: 

• Having plenty of bright and even lighting in your home. 
• Learning how to get out and about safely, with advice and support from Guide Dogs, including our sighted guide training.
• Using aids like magnifiers that help with seeing details and may be available to loan from local low vision services. 
• Using colour contrast to help see things around the home more clearly (e.g. for light switches, buttons, and other everyday items). 
• Making the most of everyday technology such as smartphones and tablets, which have apps and accessibility features for people with visual impairment.

Retinitis pigmentosa support groups

When you live with a condition that has a significant impact on your sight, it can help to connect with other people having similar experiences. They often understand the emotional side of things, as well as being able to share tips and advice from someone with real-life experience. 

Charities such as Retina UK and communities on Facebook can help you connect with other people living with retinitis pigmentosa. This means you can get peer support from someone who understands what you and your family members are going through.       

Retinitis pigmentosa and driving

If you want to drive, you must tell the DVLA that you have retinitis pigmentosa. The law requires drivers to have a minimum field of vision. Since RP is a progressive condition that particularly affects peripheral vision, it’s likely that at some point, your visual field won’t meet the minimum standard. Usually, your night vision will be affected first, meaning you will only be able to drive during the day.

It’s a good idea to plan ahead and find other transport options before you need to stop driving. Look into public transport options near you and alternatives such as taxis.

Living independently with retinitis pigmentosa

The support you need to live independently with retinitis pigmentosa is likely to change as the condition gradually affects your sight. However, the earlier you reach out and get support, the easier it can be to adapt to daily life with vision loss.

You can contact us to find out about services and support that can be tailored to your individual needs. 

Supporting children with retinitis pigmentosa

If your child has been diagnosed with RP, there are a few ways you can support their development both at home and in school. 

• It’s a good idea to make your child’s school aware of their condition and how it affects them. Qualified Teachers for Visual Impairment can provide expert support and advice. Find out more about getting education support for your child.
• There are plenty of practical ways to help your child, for example, keeping your home tidy and free of obstacles and keeping regularly used items in a consistent location so they’re easy to find.
• Children might need support for coping with their feelings about having RP, especially when dealing with uncertainty about the future. The right support from early on can help them build their confidence and fulfil their potential. We can support them at every stage of their development.

Frequently asked questions

The Royal College of Ophthalmologists champions excellence in the practice of ophthalmology and is the only professional membership body for medically qualified ophthalmologists. The RCOphth is unable to offer direct advice to patients. If you’re concerned about the health of your eyes, you should seek medical advice from your GP, optometrist or ophthalmologist.

For more support...