Category Archives: Patients’ tales

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

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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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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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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Attending your first conference – it will be more positive than you think

By Heather B I attended an ANUK Conference for the first time in 2014. My daughter was diagnosed with aniridia at 5 weeks old, she is now 3 years old so I had managed to avoid the conference for 2 years. I knew … Continue reading

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