Retinitis Pigmentosa: volunteers share their stories
Retinitis Pigmentosa (RP) is the most common inherited eye condition in the UK today, affecting around one in 4,000 people. To mark Retinitis Pigmentosa Awareness month, we asked two Sight Loss Council volunteers to share their experience of living with RP.
RP is the name given to a group of 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. In most cases, symptoms of retinitis pigmentosa appear during childhood or early adulthood. RP is a progressive condition, which means that a person’s sight loss will continue to worsen as they get older.
How I have adapted to Retinitis Pigmentosa
Steve Holiday volunteers for Tyne and Wear Sight Loss Council (SLC). Steve has RP and is registered as severely sight impaired. He believes that having a visual impairment should never stop you participating in any activities – except driving perhaps.
Below, he shares some of the adaptations he has made in order to continue doing the things he loves.
“Retinitis Pigmentosa is an interesting condition to adapt to. Since my diagnosis, I have changed many things in my life to ensure I can still do the things I have always done. Here are my top hacks:
At home
“Adapting my home to have brighter lighting and carrying a torch was key for me. I have also changed lots of equipment in my home, so things are much brighter, and the contrast stronger.
Time helps
“I decided not to get embarrassed or upset if I knock things over that I don’t see and my long cane has been instrumental in giving me more confidence. It’s my shield and it means people adapt to me, rather than me to them.
Technology
“The biggest changes have been from adapting how I use technology. I love my Kindle Paper White as it has an adaptive screen and the zoom functionality is excellent.
“I also listen to RNIB’s Talking Books through my Alexa, which is a great service. I find Alexa is brilliant for voice adaptive tasks, such as telling me my daily brief, to setting alarms and reminders.
“I use screen readers on my phone, tablet and computer. This is not because I can’t see the text, but with RP it is easy to lose your place and this saves me loads of time.”
Steve pictured during a snowy mountain climb
Living with Retinitis Pigmentosa
Harry Meade volunteers with South West London SLC. He was registered as severely sight impaired in 1999 due to Retinitis Pigmentosa. Harry lives in South-West London with his wife and enjoys tandem bike riding, travel, current affairs and listening to audio books.
He said:
“I was about 16 when I was first told I had ‘problems with my retinas’.
“My RP was discovered by a rather diligent optician, who I went to see about contact lenses.
“I am very lucky that my gradual sight loss did not stop me going through school or college. I enjoyed a fulfilling career working both in the UK, and Europe, until I came back to London aged 45.
“It was at this point I noticed a very sharp deterioration in my sight and started to need help. At first, this came in the form of Action for Blind People, and then RNIB. I went on to work for both organisations until I retired in 2022. At this point I decided to volunteer with South West London Sight Loss Council. It is my way of giving something back in retirement.
“Like so many of us with RP, the journey has been gradual in the main – with sudden realisations that things have got worse.
“The one thing which has been constant for many years is the night blindness. It feels like someone has dropped a heavy black curtain in front of my face if I go from a well-lit environment into a dark space.
“I have several vision impaired friends, and the one thing they all seem to have in common is that they are all excellent problem solvers. RP and other sight conditions mean that we nearly always need to find an alternative way of doing things – both simple and more complex.
“Preparation is key and a good memory is a big help too!”
Harry, Lucy Williams, Senior Engagement Manager for South England, Haren Thillainathan, SW London SLC member, and Guide Dog Addi. They are standing in the foyer of The Connaught Rooms at the 2023 CiTTi Awards.
Useful links
If you or someone you know has been diagnosed with retinitis pigmentosa, here are some useful links for more information.
- Retina UK – Retinitis Pigmentosa
- Fight for Sight – What is retinitis pigmentosa?
- RNIB – Inherited retinal dystrophies including retinitis pigmentosa
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Publication date: 29 February 2024