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Hello

Hi, my name is Claire and i'm here to share my sight-loss journey with you.

 

This website is a place where we can build a strong community to support each other as well as keeping you updated on what's going on in the blind and disabled communities.

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My Story...

Hi, I’m Claire and I’m registered blind. My sight loss started in 2009 when I had two strokes. They had left me with temporary paralysis on the right side of my body and a stutter. With the help of physio and speech therapy I regained the use of my right side and now my stutter only occurs if I’m unwell or tired.

 

I had started to notice my vision wasn’t so great. It was fine during the day but for some reason at night I just couldn’t see. I booked in to see an optician as I thought maybe I needed stronger glasses/contact lenses but they noticed something on the imaging. I was refer to an ophthalmologist in my local hospital and after lots of tests it turns out my stroke had caused damage to my rods and cones. 

At that time, NASA had invented bionic rods and cones and I was talked through that process. Before going ahead I had to have some more thorough checks on my eyes. This didn’t bring back good news. They could see several diseases in each eye but had no idea what they were. So having the rods and cones surgery was no longer deemed a solut. 

 

Between 2009 to 2013 I was just getting on with life, I was only allowed to drive in daylight hours but other than that my life wasn’t impacted by my eyes.

 

I had been referred to Moorfields eye Hospital in London and it was at one of these appointments in 2013 where I failed the field tests you take for driving. My driving license was revoked and I felt my independence had been taken away from me. I was registered as Sight Impaired and the realisation of sight loss hit me.

Between 2013 and 2017 I had very frequent appointments at Moorfields, where my diagnosis changes including macular dystrophy, retinitis pigmentosa to the latest one where it has stayed as a retinal dystrophy. For these 8 years my sight loss deteriorated very slowly. I was able to read and write with magnification and a few aids to help. I didn’t feel it was having the biggest impact on my life apart from the fact I was no longer allowed to drive. Then I wake up one morning and noticed that my eyesight was a lot worse than normal. I booked myself an outpatients appointment, I was very lucky to be seen that day, and it was that day in November 2017 that my ophthalmologists registered me blind there and then.

 

From the start I had always been told that by the age of 40 it was highly likely that I would be fully blind. I was 37 when they registered me blind and I thought this is it , this is where I lose all my vision.

 

Because they do not know what, why, how I have these diseases they cannot advise any further. It’s a case of regular appointments and comparing images to see what’s going on.

To explain what my eyesight is like now I have no central vision whatsoever. My eyes use the peripheral vision to be able to see but this is a fragmented, distorted, blurred and I have no depth perception. I have parts all around my peripheral vision where I have bits of vision but the main bulk of vision I have is in the top left corner of both eyes. I can see shapes, colours, light and dark I just cannot see any finer details or anything that is small. 

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