Category Archives: Patients’ tales

Patients’ tales of success or struggle with doctors, school, work or social lives

Aniridia Map

People with aniridia are spread all over the world. But where is everybody based? How many people are there with aniridia in each country? It’s impossible to have exact figures, but the Disease Maps website is a useful way to … Continue reading

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Liz’s Aniridia Network Conference 2018

Intense but recommended: Liz’s account of Aniridia Network Conference 2018, the first time she come to such an event. Continue reading

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Fern Lulham – Living with Aniridia

We were delighted to welcome motivational speaker Fern Lulham to the Aniridia Network Conference 2018 in April. She gave a very uplifting presentation about her life with aniridia, which got a very positive reaction from the audience. She also took … Continue reading

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Paul, aniridia and sports

I was born with aniridia and did the usual sports at comprehensive school. I was the only disabled person there never mind the only visually impaired pupil there. I never really liked playing rugby, football or cricket for the obvious … Continue reading

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How I See & Building My Social Network

My name is Glen, I’m 34 and I was born with aniridia and nystagmus. I recently gave a brief description of these conditions in this video for the RNIB’s How I See campaign, which has been shared widely and had a … Continue reading

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Aniridia poem competition UK results

We are elated to announce the winner plus the awarding of a special prize in our Aniridia Day related poetry competition. “I was impressed with the outstanding talent.” said judge and new trustee Emily. We were delighted to receive 10 … Continue reading

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2016 Paralympians with aniridia

Athletes with aniridia competed at the Rio 2016 Paralympic Games. Mary Fisher, New Zealand won gold in 100m backstroke S11 with a world record time and 4th or 6th in freestyle swimming at other lengths Amanda Dennis, USA won bronze with her … Continue reading

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Thanks to the person in front

Dear random pedestrian, You never knew it but you really helped a disabled person today. You came to be walking in front of me, in a environment that I found tricky to navigate alone with my visual impairment. Thank you! … Continue reading

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Glen’s story of aniridia and nystagmus

Glen has made marvellous videos about how his visual impairment due to aniridia and nystagmus affects him. He’s also produced a written versions entitled ‘Life With Aniridia‘ and ‘Life With Nystagmus‘. These are just two of many fantastic posts about disability on Glen’s … Continue reading

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Laura’s story of austism and aniridia

I’m Laura, I’m 26 and was born with aniridia. My eyes get very sore, especially during the summer; I wear dark glasses and these help with the sensitivity. I take two types of eye-drops daily to keep my eye pressures … Continue reading

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