“If I can help somebody with macular disease, then that’s my legacy”

Chris has three simple hopes for the future: to continue be able to read for as long as possible, to keep running while his sight still allows him and to welcome new treatments or even a future cure for macular disease.

After being diagnosed with central vein retinal occlusion (CVRO) and wet age-related macular degeneration (AMD) six years ago, Chris started donating to the Macular Society.

But, his passion to Beat Macular Disease didn’t stop there as his own experiences led him on to become a volunteer group leader.

Funds for the future

Chris said: “I donate to the Macular Society, as I know the money is used for research and in the future, who knows if that will mean new treatments, or a cure, but I think if I can help towards somebody with macular disease down the line, then that’s my legacy.

“Funding research is such a valuable thing because of what could be achieved, probably not for me but for other people. For me, if I can keep reading as best as I can and continue running then I’ll be reasonably happy.”

A sudden diagnosis

Chris was having coffee with his wife when he first noticed distortions in his vision in 2019. A trip to his local hospital soon returned a diagnosis of CVRO and he started having injections immediately. But after a few months he was told he also had AMD.

“It was strange really, because it all happened so quickly,” he said.

“I’d never heard of these conditions, so one day I was going about my life normally and the next I’m being told I need urgent eye injections.

“I think if I had been told it would be in a few weeks, I’m sure I would have been anxious, but I had no time to think about it. In fact I was shell-shocked, it was all happening very quickly and I just knew I needed to start my injections if I wanted to keep any sort of reasonable sight.”

Despite the challenges he faces, Chris is committed to remaining independent as he continues to do the things he loves. He said: “Reading is more difficult than before, but I like to do it regularly. Psychologically I thought ‘I enjoy reading’ so in the last couple of years I’ve been doing it more, because there may come a day when I won't be able to see well enough to read. So that’s my motivation to keep reading."

He added: “I’m very grateful for the NHS and what they can do now because there was a time with no treatments and I would have been left to go blind. So with all that, I am grateful for my treatment, to keep it at bay. So I keep positive, and I keep myself mentally strong so I can just keep being myself.”

Impact of local support

Chris is grateful to the group he leads for the confidence it has given him, and others. Seeing how they deal with macular disease and support each other has helped him feel less isolated.

He said: “I’ve found it such a good thing to talk with others and there’s that community aspect to it, talking to people who understand what it’s like and building new friendships. They also have tips and hints of how they cope with their life and show others that you can still do this or that.

“I do wish a group had been there in the beginning for me because while I didn’t have much time to think about what was happening, I did feel isolated. My wife has supported me and the medical professionals were great but they don’t have the time outside of getting me in for scans, doing injections to explain more about what it all really means.

“But being part of this group and volunteering has given me a lot of confidence in being able to head up a support group and I’m glad I did it. From running the group, I have seen people get answers to their questions and how that’s helped them going forward.

“I see people get the reassurances they need and how they feel better being part of a group with likeminded people.”