Category Archives: Patients’ tales

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

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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Posted in Campaigns, Parents' accounts, Patients' tales | Tagged , | 3 Comments

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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Call for Aniridia Network Ireland

By Eleanor from Ireland Three weeks ago I went to the Aniridia Network UK Meeting 2016 in London, it was my first time and I thoroughly enjoyed meeting people with the same eye condition as myself. I had never before … Continue reading

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Posted in ANUK news, Patients' tales | Tagged , , , | 2 Comments

Gleb ‘s Living with aniridia video

By Gleb Transcript Hi guys. My name is Gleb and today I’m going to talk about aniridia and my life basically So I have aniridia. For those who don’t know, what aniridia is. it is the inherited sporadic eye disease … Continue reading

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Skin in the game – participation in aniridia research

Sarah tells how her skin sample is helping research into aniridia, and yours can too. Having a rare eye condition can seem like a disadvantage a lot of the time, but there are times when you get an exciting opportunity to … Continue reading

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Posted in Patients' tales, Research | Tagged , , , , | 1 Comment

Hannah’s rare story

Today is the rarest of days , so what better day to raise awareness of rare conditions and the people that live with them every day. I am 1:47,000 which makes this 1:1401 day (365×4+1) sound common. What makes me … Continue reading

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Francesca’s student life

This article by Francesca is about finding her feet in her first year at uni and a few pointers for anyone who’s heading there in the next few weeks, from her perspective. Francesca has aniridia and writes in Brighter Futures … Continue reading

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