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Category Archives: Patients’ tales
Al’s sight loss and depression journey
Hi, I’m Al, I’m 28 and I’m from South Wales. I have been registered as severely sight impaired (blind) since birth due to aniridia and nystagmus, caused by a rare missing gene that resulted in a condition called WAGR … Continue reading
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
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
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
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
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
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
Posted in Campaigns, Parents' accounts, Patients' tales
Tagged Aniridia Day, AniridiaPoem
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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
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
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
