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Category Archives: Patients’ tales
Conference 2022
Our main event of the year took place online today. People from all arond the UK, Ireland and beyond joined via Zoom to hear and talk about various aspects of aniridia. There reactions were heartening: I’m very grateful for all … Continue reading
Katie: Judo Paralympian with aniridia
To show what’s possible for a person with aniridia, we checked in with one competing in judo at the Tokyo Paralympics. Meet Katie, part of Team USA. I’m Katie Davis from Sacramento California. I was born with aniridia and nystagmus, … Continue reading
Amanda: Goalball Paralympian with aniridia
To demonstrate the amazing things a person with aniridia can achieve, we interviewed one competing at their 3rd Paralympics in Tokyo. Amanda is part of Team USA, hoping to better her USA Women’s Goalball team’s bronze medal won in 2016. … Continue reading
Bernie and Abbie interview each other
Mother and daughter with aniridia decided to ask each other questions on camera about their lives to celebreate Aniridia Day 2021 Abbie has made other videos about aniridia and other aspects of her life, check them out. To take part … Continue reading
Faith’s story
“Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries” Continue reading
Laura’s story
Laura, who has aniridia, kindly reached out to us to share her story. Her passion for sport and strength to support others to find the enjoyment she has, shines through. For Rare Diseases Day 2021, the key messages are; Rare … Continue reading
Insecurity and aniridia
Two things taught Fern about insecurity – being blind due to aniridia and online dating. Watch her amazing TEDx talk. From denying her disability entirely to learning that she didn’t have to fully accept being blind to reveal it to … Continue reading
Haya’s journey to an aniridia conference
My name is Haya. People are often curious in what I do and how I got to university with developmental delays. They ask me what my hobbies and interests are and the general questions that you ask a person in … Continue reading
Dealing with hard to see small coins
One of the things I struggle with is due to my visual impairment, is quickly identifying coins when paying for things. I get flustered and often hand over the wrong coins because I’ve mistaken a 10p for a 50p. To … Continue reading
Celebrating Difference book crowdfunder
A crowdfunding campaign is underway to publish a book featuring children with rare conditions, including two with WAGR 11p Deletion Syndrome. Give the book your support and get a copy. The proposed book is the result of a photography project … Continue reading
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