Category Archives: Patients’ tales

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

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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Graham’s story of life with aniridia and stem cell treatment

Graham has written a blog post about growing up in the UK with aniridia and losing sight due to glaucoma/cataracts. He also writes about the recent initial success at restoring some sight by transplanting stem cells that began in his … Continue reading

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Al’s sight loss and depression journey

  Hi, I’m Al, I’m 28 and I’m from South Wales. I have been registered as severely sight impaired (blind) since birth due to aniridia and nystagmus, caused by a rare missing gene that resulted in a condition called WAGR … Continue reading

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Aniridia Map

People with aniridia are spread all over the world. But where is everybody based? How many people are there with aniridia in each country? It’s impossible to have exact figures, but the Disease Maps website is a useful way to … Continue reading

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Liz’s Aniridia Network Conference 2018

Intense but recommended: Liz’s account of Aniridia Network Conference 2018, the first time she come to such an event. Continue reading

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Fern Lulham – Living with Aniridia

We were delighted to welcome motivational speaker Fern Lulham to the Aniridia Network Conference 2018 in April. She gave a very uplifting presentation about her life with aniridia, which got a very positive reaction from the audience. She also took … Continue reading

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Paul, aniridia and sports

I was born with aniridia and did the usual sports at comprehensive school. I was the only disabled person there never mind the only visually impaired pupil there. I never really liked playing rugby, football or cricket for the obvious … Continue reading

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