“I wanted to know what I could do to try and help myself”

Claire found herself “alone and lost” as she tried to come to terms with her Stargardt diagnosis, not knowing anybody else with the rare form of sight loss.

The 47-year-old works in occupational therapy and physiotherapy and relies on using her laptop to write up patient notes. It was while doing so that she noticed blurry, distorted vision in 2019.

After seeing her optician and having had tests at her local hospital, Claire was referred to Moorfields Eye Hospital, where genetic testing confirmed she had Stargardt disease.

Claire said: “I think it really hit me at that point. I remember getting those results, it was weird. I just broke down because at that point, I was like, ‘this is real, and what am I going to do?’

“I’d never heard of Stargardt’s before. When my nan was alive, she had been diagnosed with macular degeneration in her early 90s. I suppose, like many others, I had heard of macular disease in relation to older people, but never with people that were in my age group or younger.”

Support from the Macular Society

Claire headed online to try and find out more information, having left hospital without knowing where to go for support or much knowledge about the condition.

She said: “My main information came from the Macular Society because they were the first people who actually gave me sound information on what I could do. I wanted to know what I could do to try and help myself and they were really supportive.

“I felt so lost. I think I was at work one day and I had finished with a patient, and I remember sitting in my car and ringing the Macular Society Helpline because I felt so alone and so lost. The thing with Stargardt disease, it’s not the same as when you’re diagnosed with something like diabetes, where there’s a chance you will know someone else with it. I knew nobody, absolutely nobody that was in my age group who was diagnosed with macular disease.

“The fact I wouldn’t be able to see at some point, I could end up severely sight impaired, and I felt lost and alone because I had no one to even talk to. I had all these things rattling around in my head: How am I going to cope? What about work? This just spurred me to reach out.”

She described her first call to the Helpline as “a really positive experience”. She said: “Talking to someone who understood was massive as well.”

Claire’s sight has deteriorated slowly in the past six years, but it has still begun to impact her in everyday life, such as relying on lifts as she can no longer see well enough to drive at night.

Inspired through counselling

However, it was through the Macular Society’s counselling service that Claire has been able to adapt the most, with both one-on-one counselling and being part of an employment support group.

She explained: “After I got the genetic results is when it really hit and I was quite low. I still felt very alone and isolated. I used the counselling service around that time, which was really helpful because it gave me a chance again. Having someone who understood and someone I could talk through all of these worries and concerns with. It was having a safe space to talk to somebody and that was huge.”

In the employment counselling sessions, Claire felt inspired after hearing other people’s experiences at work.

Claire said: “Everyone had varying degrees of sight loss and just hearing from one lady that was registered blind, hearing what she had achieved in her life was very inspirational; how she had this ‘I’m not going to let it hold me back’ attitude, and that was great to hear.

“I do have sight. Yes, my right eye is worse than my left but knowing that if things got worse then this lady is an inspiration. She’s still able to carry on and do these things. Again, I think it just feeds into that knowledge that you’re not alone and you can achieve anything.

“Just having that connection with people that are living within the same sort of circumstances really, I felt it was really beneficial.”

Hopes for life-changing treatment

Looking forward, Claire is optimistic about trials in the search for a treatment for Stargardt.

“I can't begin to tell you how much it would change my life. I think the fact that research goes on gives us hope anyway, but if the research led to treatments, however that looked, I think it would be amazing.

“I think research is hugely important. The fact that the Macular Society funds research and there are pharmaceutical companies and other places that are doing this research is really great," she said.