Category Archives: Patients’ tales

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

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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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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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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Take a (No) #IrisSelfie to raise awareness and funds for aniridia

We want to raise awareness of aniridia, help those who are visually impaired because of it, and support treatment research. So we want you to post a photo of your eye, WITH or WITHOUT an iris on Twitter / Facebook / … Continue reading

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Aniridia doesn’t stop Jessica doing all kinds of sports

ByJessica I am 21 living in London, have partial aniridia and have never let it stop me from any kind of sport. know some people get worried about sporting with an eye condition like this and am fully aware that … Continue reading

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Lois leads England Women Blind Cricket Team

Lois who has aniridia is captain of the England Women’s Blind Cricket Team. They are currently on tour in Nepal. Before they left, she and others were interviewed by BBC Radio 4 In Touch The Nepalese cricket team inspired the Cricket … Continue reading

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Posted in Other agencies, Patients' tales | Tagged | 2 Comments