Retinitis Pigmentosa Awareness Month – Jack’s story
This February marks Retinitis Pigmentosa awareness month. A month dedicated to raising awareness of Retinitis Pigmentosa (RP), 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.
We spoke to our Engagement Manager for North East England, Jack Moffat, about his journey with RP.
Jack’s story
“I was diagnosed with RP when I was three. My parents were aware that there was a chance of me having the condition due to the genetic pattern RP follows. I was twelve when I started to understand the magnitude of what was happening to me. Whilst I had managed to conceal my sight loss – which at this point was limited to night blindness and poor visual field – I was beginning to struggle mentally.
Jack, age three
“I couldn’t stop thinking: How will I get a job? Will I be able to have a family? Will people still want to be friends with me?”
“Obviously, these are very complex emotions for a young boy to deal with. Grieving for something that continuously gets worse is extremely difficult. It wasn’t until I got older that I started my journey of acceptance.
“At this time, I took on various volunteering roles within the sight loss sector and joined Durham Visually Impaired (VI) Cricket Club. This introduced me to many successful and fulfilled people with sight loss which inspired me.
“It made me realise that blindness did not have to be the end for me.”
Acceptance
“A huge part of my acceptance came with the arrival of my first child when I was 27. I began to walk taller and hold my head up higher. I was proud of who I was. No longer embarrassed to walk with my cane, but proud to be a visually impaired person, passionate about supporting other blind and partially sighted people.
“I am now 31 years old and I was told that this is the age that my RP would deteriorate the fastest. This is the case, and I now have approximately three percent of my central vision remaining.
“Nevertheless, I do not let this stop me living my life. I do more activities and travel far more than I ever did with clearer vision.
“There is no denying that it’s been a hard road, but for me, the best means to fight this condition is with a positive attitude. Fortunately, I have an ability to laugh at myself and have the support of loving family and friends. And now, I have my dream job!
“I could not be happier with what I have overcome and achieved. I will always ensure that I stand proud as a man with RP.”
Jack, pictured with his wife Becky, and son FinlayRet
Jack’s advice for navigating sight loss
- Have faith and believe in the will of others to support you. That’s what friends and family are for.
- Don’t expect too much of yourself to quickly. Acceptance of sight loss can take time.
- Be brave and tackle long cane training as early as you feel able. It opens up the world again.
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.
Stay in the know
Want to get involved in our national campaigns? Stay up to date with news from Sight Loss Councils and Thomas Pocklington Trust by signing up to our mailing list.
Publication date: 20 February 2024