Living With Retinopathy Of Prematurity

Hello everyone, so today I thought I’d do a blog on my eye condition and my experiences as being severely sight impaired and for you to get a bit of an insight into my life.
I was born at 24 weeks, as a result of this I suffer from Retinopathy of Prematurity (ROP), I weighed the same weight as a bag of sugar when I was born so I was pretty tiny. I’ve got my first pair of shoes somewhere and they are the smallest things ever!
I only have light perception so my vision is limited. I am a braille and screen-reader user, I can also read some French and German braille and know music braille as I play the flute. With regards to screen-readers I use Jaws and the Apple VoiceOver.
I always attended mainstream school and I am about to embark on my second year of university in September. I didn’t have the best experience at school, but it wasn’t the worst either – I’ve heard a lot more stories and experiences of people so I feel quite lucky. Although things were tough at times I came out with good GCSE’s and A-level’s so that’s the main thing.
One of the things that really bugged me about my disability whilst I was at school and to be completely honest it still bugs me sometimes now is people’s ideas on it; they’d think or say “you can’t do that, you’re blind”…really? Why not let me have a go and then we’ll see for ourselves won’t we? Also, the people in my year had the impression that it wasn’t “cool” or “popular” to hang around with the girl with the disability, the blind girl or whatever you want to say. I never really let this bother me, I had my small circle of friends so didn’t feel the need to get involved with their ideas. One thing that did annoy me and I began to think about it even more as I progressed into sixth form was why were these ideas still continuing – some people I’d known for 7 years or even longer for people that I went to primary school with. Why did they not look beyond my disability? This I cannot answer but let me tell you one thing; things changed when I got to university. People seemed to grow up and accept my disability. There’s people from all walks of life at university so I guess that helps. Maybe I should do a blog on my transition from school to university at some point?
I have never been a confident person but as I have gotten older I have embraced my disability, not let it define me and never let it be a barrier. I have always done the everyday things that fully sighted people do; go out with friends, shopping, go to the cinema, go out for meals, swimming…you get the idea. At the end of the day, your disability is a part of you, it’s something that you have to cope and live with, it shouldn’t stop you from doing the things that you love to do.
This isn’t some story on my life and what I like doing, it is just to say my experiences of Retinopathy Of Prematurity and to help others. Always remember, no matter what you’re going through you are not alone and it helps to talk to someone close or someone that has the same disability or that is experiencing the same thing as you. There’s bound to be someone out there that is going through exactly the same thing so always remember that.

Please do let me know your thoughts on my posts or if you have any suggestions for what you would like me to blog about!


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