Living with RP: Jack’s Story, Two Years On
Two years ago, Jack shared his story of growing up with Retinitis Pigmentosa (RP), speaking openly about diagnosis, acceptance and learning to live proudly with sight loss. Since then, his vision has continued to change – but so has his mindset.
In this follow-up conversation, Jack reflects on how his sight has deteriorated, the impact this has had on his day-to-day life, and the work he’s done on himself to adapt, rebuild, and keep moving forward.
Over the last couple of years, how has your sight changed – and how has your mindset changed alongside it?
“In the last few months I have had to accept the loss of sight in my left eye. My right eye has around four percent of central field remaining. Emotionally it hurts, let’s not pretend otherwise.
“Hobbies are having to be adapted to suit my new normal. Watching football is now listening to it on the radio. Reading a book to my son, Finlay, is now making a story up as I go along.
“I have not taken this lightly and recently reached out to a counselling service for advice about coping mechanisms to get through those times where frustration gets the better of me. It is sincerely one of the best decisions I have ever made.
“Now, I have far more good days than bad. The support of a loving family and friends, along with having an amazingly empathetic son, is all I need to get by. Although I will forever be a work in progress, I am up for the fight. Bring it on!”
Was there a moment that helped you re-frame things?
“I have always been open about my sight loss with my son, he is six. I want him to see his Dad be proud of who he is. If I am not proud of myself, how can I expect him to be?
“I was having a particularly bad day recently and just didn’t want to be ‘blind’ for a walk around my local town. Finlay simply couldn’t comprehend this.
“But dad you need your cane! I’ll hold your hand dad, don’t worry.”
“We can all let our ego take over at times, but he was right and I used my cane. Safety and being proud of who you are is paramount. I won’t go anywhere without my cane now.
“These moments put to bed a lifetime of fear of ‘will my child be ashamed of me?’
“I can put that fear well and truly to bed now.”
What’s helped you build resilience as your vision has worsened?
“The way my friends have rallied around me. The little things – like clearing a space for me when I visit – mean a great deal.
“They still take the mickey out of me, as friends do. If that ever stops, it means they’re treating me differently – and I’d hate that.”
Is there something you understand now about RP that you didn’t before?
“The last stage is tough, but nowhere near as tough as what you build it up to be. The lifetime of fear and anxiety was just me wasting precious sighted time.”
“I am less scared of total blindness than ever before. I have accepted it will happen and I have no hang ups regarding a potential cure.
“Tech and developments in gene therapy are extremely exciting. Nevertheless, we have heard this all before. I am not going to spend a lifetime waiting for something that may never arrive. I will enjoy what I have. Anything else is a huge bonus.
“I am an extremely lucky man in mildly unlucky circumstances. I won’t give up – blind or otherwise I’ll always have something to smile about.”
Jack’s story in 2024
Jack first shared his story during Retinitis Pigmentosa Awareness Month in 2024.
Useful links
If you or someone you know has been diagnosed with Retinitis Pigmentosa, the following links provide further information.
- Retina UK – Retinitis Pigmentosa
- Fight for Sight – What is retinitis pigmentosa?
- RNIB – Inherited retinal dystrophies including retinitis pigmentosa
- Thomas Pocklington Trust’s ‘What do we see?’ video
- Thomas Pocklington Trust’s ‘Eyecare and You’ webinar on Retinal Dystrophies
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Publication date: 26 February 2026