“How I feel, how I cope and how I adapt…” Stargardt disease

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Stargardt disease affects one in ten thousand people and I am that one… Hi, I’m Elise and I have lived every day for the past ten years of my life with a life-altering rare genetic eye disease. I guarantee that if you were to ask somebody you know if they know what Stardgarts is, they wouldn’t have a single clue. I also 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 a visual impairment (VI). It’s essentially what’s called a hidden disability, which often causes people to easily dismiss it and be completely unaware of how much it affects pretty much every single thing I do.

Perfectionism and Stargardt’s disease

Being a perfectionist and having an extremely creative mind, with a visual impairment, is challenging to say the least, with attention to detail being something I pride myself in, as well as the thing I visually struggle with most. 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 and frequently when showing people how I navigate my work, it’ll shock and enlighten them. If I was to make a list of the number of little things I do each day to be able to access everything, it would be colossal! The minute things that I don’t even clock I’m doing are generally the things that other people pick up on most, for example, sitting closer to computer and TV screens, and holding my phone closer to my face, or using my phone to take photos of labels or packets and zoom in. Due to the fact that I have a blind spot in the centre of my vision, meaning I have to look to the side of something to be able to see it, people will often think that I’m distracted, looking at something behind them and will turn around to see what they’re missing out on, but once I’ve explained the reason, they never really mention it again.

Attending university

Studying for a degree at university is tough enough as it is, with harsh deadlines, masses of research and a large portion of independent work, however, what the majority of people find almost impossible to grasp. is just how strenuous it is for me with my condition being a never-ending obstacle in my path. But what I’d particularly like to share, is the way I have successfully found my way over, (not around), but over my obstacle, and adapted! 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, to focus more on the quality of what I produce. Technology is honestly my best friend when it comes to my condition, both at home and university. Enabling the zoom accessibility option on my computer comes so naturally to me now, that I could do it with my eyes closed and quite often if I am unable to see the keys on a keyboard and I don’t have my one from home with bigger letters, I can type without really seeing where any of the letters are at all, simply from memory! (I should really learn to touch type shouldn’t I…).

Frustrations of vision impairment

I’d say that being a gym rat, with a visual impairment, is one of the most frustrating things, as going to the gym on a daily basis is something I have become completely obsessed with! Similar to other aspects of my life, I have the little adaptations that come naturally to me, for example, if I am clipping a handle onto one of the cable machines, I won’t even look at what I’m doing, it’s all done by touch. When using barbells, to gauge exactly where the middle of the bar is, I feel along it and place my hands just past the rough areas, (as I know this is exactly in the centre). I’m not really sure how many other people do these things simply because feeling is sometimes easier than looking, but I do it all out of necessity. I could write an entire book purely on how I navigate the gym and I would absolutely love to share every detail!

I could go on and on about my condition for days on end. There is so much I would like to speak about, as to how I feel, how I cope and how I adapt to every aspect of my life with Stardgarts, so if you would like to know more, or you have a burning question, I would be more than happy to have a chat!

Elise Heron, Digital marketing executive, Sierra Six Media.

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