Life with Retinitis Pigmentosa
Retinitis Pigmentosa (RP) is one of the most common eye conditions in the UK today. RP is the name given to a group of inherited eye conditions called retinal dystrophies. These conditions cause a slow loss of vision, beginning with night vision and peripheral (side) vision and eventually affecting central, colour and reading vision.
February is Retinitis Pigmentosa Awareness month and we asked Birmingham Sight Loss Council member, Valerie Griffiths, to tell us more about living with RP.
“I was made aware of having RP when I was about 12 years old. We used to have family trips to the Research Department at the old Birmingham Eye Hospital. The whole family underwent hundreds of tests over several years, My Father had RP but none of my brothers have ever developed it.
“I was 42 when my RP started to affect my everyday life. I found I needed to resort to large print books, up until then the only major problem I’d had was ‘night blindness’.
“The deterioration has been slow, which can be quite common in people with RP. A downhill slide is often followed by a plateau – sometimes for several years. I now have no usable vision. I can differentiate between light and dark, but I’m not sure I how much I trust that anymore.
“Day to day I have learnt to cope with having no sight. There are so many aids and gadgets which can make our lives so much easier. I have learnt to adapt over the years, so even though I live on my own I still cook, do household chores, and generally leave the house with colour co-ordinated clothes on!
“Blind people can do most things that sighted people do, we just have to work out a way that suits our requirements.”
Valerie’s advice to other people living with sight loss is:
- Sometimes you will come across things that seem impossible, but you must approach the problem in a different way.
- Never start a project in a rush, blind people need more time to do almost everything, so be patient.
- Ask your friends. Sighted friends if you need a pair of eyes, or VI friends who may have thought of another way to solve a problem. Friends are important.
- Try never to be daunted by life and have fun!
Thomas Pocklington Trust has written about the most common eye conditions, sharing their symptoms, treatments, and causes.
Find out more about Retinitis Pigmentosa
About Sight Loss Councils
Sight Loss Councils are led by blind and partially sighted members and funded by Thomas Pocklington Trust. We advocate the needs of visually impaired people in our communities and work to improve access to goods and services at a local and national level.
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Publication date: 15 February 2023