"My life is none the worse for having Stargardt disease"Posted: Monday 22 July 2019 at 15:50
Daniel was diagnosed with Stargardt disease at the age of 10. But being diagnosed at a young age has enabled him to adapt and his condition has never stood in the way of him achieving his goals.
He said: "I was 10 years old when I was diagnosed with Stargardt’s disease, a form of macular degeneration that’s hereditary so I was born with it but it didn’t develop straightaway.
"I was too young to comprehend what it all meant. Nothing changed for me though so why should I have cared? I could still do everything I did before but now I had some cool gadgets that made reading easy and copying from the chalkboard a breeze!
"I can imagine that losing your vision at a later age after having close to perfect sight would be devastating but as I never had good vision it never really affected me in the same way."
However, his diagnosis was a cause of concern for his parents who worried about what his future had in store.
He added: "I know it did affect my parents, they worried for my future and how I’d manage at school and whether I’d be able get a job, my mum was upset that my independence would be limited and that I’d never be able to drive or play sports.
"Certain things have got to me over the years, like the fact that I’ll never be able to drive but because I tend not to dwell or overthink these things they have never been anything more than a slight disappointment. I sometimes wonder what it would have been like to see like others do but again I don’t wonder for long."
Over the years it is not only Daniel who has learnt to adapt to his condition, but his friends and family have too.
"Being visually impaired means adapting and it means the same for those around you," he said. "I don’t cross a road unless at a crossing, as I’ve had a few near. My sister automatically reads menus aloud knowing I’ll be listening. My fiancé reads out subtitles automatically and very quickly learnt never to nod in response to anything I say or to pull any kind of face to convey something. All of the people I’ve surrounded myself with don’t notice my disease and have adapted as much as I have had to.
"Low vision aids and the technology that’s available are also a god send! They enable people like me to live as normally as possible, without them I couldn’t work, I couldn’t even read or use my phone or read cooking instructions to feed myself so my life would be much worse without them.
"Finding a job was hard, there are a lot of jobs you simply cannot do with this disease and there are many places that just aren’t interested or don’t understand. I tried working in an off-license for a while but there was a communication barrier and they didn’t like that I struggled with the till in front of customers so they didn’t ask me to stay. I couldn’t believe my luck with my current job, I now work at a haulage company in the accounts department and they’ve been nothing but great, I’ve never felt remotely different to anyone else and I’ve been there seven years and counting.
"Other struggles I have encountered include dating. Dating was difficult, mostly because I can’t see facial cues and telling someone upfront that you’re visually impaired will often scare them away and I experienced this a few times, people wonder if you can really see them and what they look like so I stopped mentioning it until they got to know me. My now fiancé doesn’t notice and why should he? But people can be shallow.
"My partner and I bought our first house in 2017 and will be married come December this year and although it’s taken a long time getting here I couldn’t ask for anything more.
"My life is none the worse for having Stargardt disease. Yes, I sometimes need the menu reading to me and yes, public transport still makes me anxious even at 30 but that’s why we chose a house close enough so that I could walk to work and it couldn’t be better! With the right attitude, the right equipment and the right people around you vision loss doesn’t have to feel like a life sentence. I often forget there’s anything wrong with me and I’d like to hope the same can be true for everyone else."
Despite having adapted to his sight loss, Daniel welcomes more research into macular disease and hopes a cure will be found.
He adds: "The funding of research into macular disease is so important because it means that although a lot of us cope very well it would mean that children and future generations may not have to ‘cope’ they could have it so much easier."
The Macular Society has been supporting people with macular conditions for over 30 years. We offer information and support while we fund research to find a cure so that one day we can overcome macular disease. All our services are free; no one has to face macular disease alone.
If you have been diagnosed with macular disease call us on 0300 3030 111 to find out more about our free support services.