Category Archives: Patients’ tales

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

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

Rate this:

Posted in Parents' accounts, Patients' tales | Tagged | Leave a comment

Faith’s story

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

Rate this:

Posted in Patients' tales | Tagged | Leave a comment

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

Rate this:

Posted in Patients' tales | Tagged , | Leave a comment

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

Rate this:

Posted in Patients' tales | Tagged , , | Leave a comment

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

Rate this:

Posted in Patients' tales | Tagged , , | 1 Comment

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

Rate this:

Posted in Patients' tales | Tagged | Leave a comment

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

Rate this:

Posted in Campaigns, Patients' tales | Leave a comment

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

Rate this:

Posted in Patients' tales, Research | Tagged , | 1 Comment

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

Rate this:

Posted in Patients' tales | Tagged , , | Leave a comment

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

Rate this:

Posted in Patients' tales | Tagged , | 2 Comments