"When you know you can help people, it gives you a buzz"

Peter has lived with a rare sight loss condition most of his life, but until a few years ago had never met another person living with it.   

In November 2022 a chance encounter changed all that, leading him on a journey to help others with Stargardt disease.  

Peter was sitting on the seafront sheltering from the rain, with the feeling of fresh air on his face and enjoying the sounds of the seaside. He was sat with his wife, Anne, and ahead of them was BBC Children In Need’s Pudsey Bear entertaining passers-by. 

Peter was relying on Anne to describe the scene in front of them. Sitting close by was a lady called Jeanie, who asked them what Pudsey was doing. She too had Stargardt disease, making it a breakthrough moment for Peter, 72, who was diagnosed aged 10. 

“I ended up chatting to Jeanie and this was the first time I had ever met anyone else with the condition in my life,” said Peter, reflecting on his sight loss journey for Rare Disease Day. “It was bumping into Jeanie on the seafront that has opened up this new chapter in my life.” 

Meeting and supporting others with macular disease

Through Jeanie, Peter found the Macular Society and he jumped at the chance to volunteer with the Teignbridge Macular Society Support Group in 2023, to meet and help more people living with different macular conditions, including Stargardt.

Peter said: “When I joined, I knew I could run the group and it has really grown. I’m able to get in touch with local people, I’m able to share everything I know about macular disease, and ways of coping based on my experiences. I’m helping people make the most of using their phones, putting people in touch with one another, and answering people’s questions. 

“When you know you can help people, it gives you a buzz. Some of the best meetings are just when we chat away, people feel more confident to open up about their experience and they love it. I feel like I am doing some good.” 

Peter has now been a Macular Society member for more than 30 years, and until discovering the charity, not only had he never met another person with Stargardt, he had not met another person with sight loss. 

“I felt very isolated not knowing anyone with macular degeneration, let alone Stargardt. I was only mixing with fully sighted people in my life,” Peter said. 

“The Macular Society has kept me up to date with research developments and now I’m the leader of our local group so people are coming to me, asking me questions about what they should be doing or eating, or asking me about Charles Bonnet hallucinations. So, I’m able to pass on information, help which I‘ve received from Macular Society over the years.”

Supporting others

Peter’s passion for supporting local people with sight loss was recognised when he received the Volunteer of the Year award at the Stars of Teignmouth Awards 2025. He had been nominated for ‘transforming the lives of blind and partially sighted adults across Teignmouth and the surrounding areas by founding and leading the local Macular Society Group’. 

“I was gobsmacked to receive it,” said Devon-based Peter. “I felt all the nominated volunteers deserved the prize. Just being recognised was amazing and I hadn’t expected to win. I’m a blind person, helping other blind people but there were other charities and people doing all sorts who equally deserved to win, but it was nice for everyone to have some awareness raised.” 

After studying business when he was younger, Peter went on to join his family’s manufacturing business. Following in his grandfather and father’s footsteps, he went on to manage the firm. 

Peter has always been determined not to let Stargardt disease hold him back. 

He said: “Anne would always say I am fiercely independent but we support each other and there are times a sighted person makes a difference; helping to check my tax return or making sure my clothes are clean.

“I have a guide dog Vance, who makes a massive difference because I can now go out walking anywhere without bumping into things, I have got the confidence to go walking in the dark.” 

At home he has embraced finding ways around everyday problems, using aides such as a talking microwave, talking scales and a liquid level indicator. He said his best piece of advice was squirting toothpaste straight into his mouth, rather than trying to squeeze it onto a small toothbrush head.

Peter's hopes for the future

Peter admitted it was people and nature he would like to see again but, said he was encouraged by the ongoing research into Stargardt, which was a topic discusssed at the Macular Disease Conference 2025: Hope for the Future. 

He said: “It would be wonderful to see my grandchildren growing up, I’ve not been able to even make eye contact so just to see people’s expressions would be fantastic. 

“I do miss not being able to see the countryside, the seaside, the trees and the fields. I’ve not been able to recognise people’s faces, but it’s the other things which are starting to disappear as well now, so your memory and imagination is a brilliant thing, so you can continue to fill in the gaps. 

“I’d love a cure or some sort of stabilisation but there is research taking place into Stargardt’s in children, and actually that’s a good place for it to be. To stop children from losing their sight to this would be great. I’d love to see again, of course I would, but I think I’m past that, so to stop children going down the route I went, that would be fantastic.”