Elise: My day-to-day with a life-altering genetic eye disease

24 September 21

written by:

Anna Riley

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After her diagnosis at 10 years old, Elise, now a third year university student and a digital creator, tells us how Stargardt affects her everyday life.

Stargardt disease affects one in 8,000-10,000 people and I am that one.

“I have lived every day for the past ten years of my life with a life-altering rare genetic eye disease. But I guarantee that if you were to meet me, not knowing a single thing about me, you would be entirely oblivious to the fact that I have the condition. It’s essentially what's called a hidden disability, which most people are completely unaware of. 

“Because of Stargardt, I have a blind spot in the centre of my vision. This means I have to look to the side of something to be able to see it. This can confuse people when I’m having a conversation with them as they think I’m distracted or looking at something going on behind them. I also have to sit closer to computer and TV screens and hold my phone closer to my face, or use my phone to take photos of labels or packets and zoom in to read what is on the packet more clearly.

“Using the accessibility features on the software and gadgets I use day to day comes naturally to me, so I often forget how alien it all is for most other people. When I show people how I navigate my work, it’ll sometimes shock and enlighten them."

"Technology is my best friend"

“At university, I did find things strenuous to begin with. Studying for a degree is tough enough as it is with harsh deadlines, masses of research and a large portion of independent work. I have thankfully been able to overcome the challenges and adapted over time. With all of my projects taking me that little bit longer to complete than other students, I am granted a two-week extension for all of my work. Having this really eases the stress of taking longer to complete things and gives me the peace of mind that I deserve. Technology is honestly my best friend when it comes to my condition, both at home and university.

“In terms of applying and finding jobs, I found this quite tricky due to not being able to undertake certain roles. It used to worry me and make me doubt whether I’d find a job that’s right for me. Now, I realise that people can be so helpful and that although there might be difficulties along the way, that it can be done and has been done. 

“My first job was at Adventure Island, a theme park in Southend. The staff there were very helpful which made things very easy. I even remember asking a member of staff to read out the information on paperwork I had to sign. This instantly made me feel more comfortable and eased my worries for the future.

“If there is one thing I have learnt, it’s that being different is OK. Every single person has their own story and their own worries in life, so I’ve learnt to get on with everything and adapt to every situation.”

To find out more about Stargardt, visit our information page