Category Archives: Patients’ tales

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

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

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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

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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

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Faith’s story

“Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries” Continue reading

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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

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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

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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

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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

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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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Cornea Connect 2019

#CorneaConnect was a fantastic day discussing aniridia with medical researchers and patients at UCL Institute of Ophthalmology and Moorfields Eye Hospital. It aimed to bring aniridia patients together with scientists and clinicians in the Cells For Sight team, to learn about cornea research and … Continue reading

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