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Category Archives: Patients’ tales
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
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
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
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
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
Posted in ANUK news, Patients' tales
Tagged conference, event, Republic of IIreland, volunteering
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
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
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
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
Julbo sunglasses for infants
