Why sign up to help with research?

Posted: Monday 13 July 2020

Are you interested in volunteering for clinical trials to help find a cure for macular disease? Two Macular Society members, explain why they put themselves forward as research volunteers and what they hope the future holds.

Firstly Carmen Kilner from Surrey talks about her motivations to sign up. 

"My mother lost her sight to macular degeneration – the only treatment available for her was lasers," she said. "I feel privileged to be able to help people.”

Carmen had had her first three injections when she was recruited to take part in a trial. She said: "After lots of tests to make sure I was suitable for the trial, I had the treatment: around 10 minutes of pulsed X-rays, followed by an injection. My eye was a little dry, but not painful.

“Since then I’ve been back each month for more monitoring and tests of my distance vision. I won’t know whether I’m in the placebo group for another three years, but in nine months I’ve needed only one more injection, and I can read a line further down the chart.

“Having such regular monitoring has been a lovely safety net too. I’ll miss my nurse and consultant when the trial ends. I’ll have to sign up for another one!”

Carmen said she is hopes her participation will have a postive impact on her children's future. “There’s obviously a genetic element to macular degeneration in my case, so I know that my children are at risk", she said. "I’m so pleased to be able to contribute to something that could have a tremendous effect for them, for other people, and for the NHS as a whole.”

Mary Gilchrist also signed up for research to help future generations. 

She said: "My mother had macular degeneration so I knew what was coming. I have a daughter and a granddaughter and by the time they get to my age I would like to think there was something in place for the younger generation.”

Talking about the process, Mary underwent a small operation which involved having a synthetic gene injected into the back of her eye to take over from a faulty gene that has caused the AMD.

She said: "After the operation I had some photographs taken and you could see a bubble where they’d injected into my eye.I have to go back regularly to have my eyes tested, just as though I was having them tested for glasses." 

She added: "The research nurse calls me to make sure everything is still okay with my eyes and that I haven’t been allergic to anything.“I just cannot praise Sunderland Eye Infirmary enough. They were absolutely amazing. They explained everything to me so I could understand, because sometimes some people don’t realise they are talking over your head.”  

Mary hopes the one-off injection will slow down the macular degeneration. "If this trial means I can still read, and do a little bit of my craft work, that would make me happy," she said. "I used to make quite intricate cards with a lot of cutting involved but I can’t do that now." 

Can you help with research? Join the Macular Society’s research database today