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Category Archives: Patients’ tales
Grace wins Child of Sussex award
Congratulations to Grace, who has WAGR and won the local Child of Sussex awards in June. She was nominated by her school, and then got through to the final 50 nominees. She won her category of Children’s Champion being recognised … Continue reading
Empathising with my son – Raising a child with anirida when you have it too
At our recent online meetup to mark Aniridia Day and Father’s Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’s like to navigate … Continue reading
Glass half empty? We can’t see the glass anyway!
By Robert, who has aniridia You have probably been asked this question before: Are you a glass-half-full or a glass-half-empty person? Well, let me rephrase that for our community. Are you a person living in a society that isn’t built … Continue reading
Sudden sight loss on Sunday morning
James’s story of a sudden loss of vision, leading to an urgent visit to hospital. eye surgery and recovery. Continue reading
Posted in Patients' tales
Tagged eyedrops, Moorfields, retinal detachment, sight loss, surgery, vitrectomy
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Being A Carer
Glen is documenting his and his mum’s journey in the hope that it raises awareness of the impacts of going blind, having falls and other effects of old age. Continue reading
The line running to and from Moorfields
By Sinead who has aniridia The other day, we travelled to Moorfields Eye Hospital in London to try to save the tiny bit of eyesight my sister has left. We were hoping beyond hope. When you get off the Tube … Continue reading
Privilege, Protest, Power
Talk by Elliott, person with aniridia at Conference 2025 “Identifying privilege, embracing protest and challenging power have all been integral to a journey these 25 years that I could not have imagined. “Fighting for a seat at the table for … Continue reading
Conference 2025
“I found it very informative and took things from each of the talks that I feel like could use going forward to inform my own family and myself when dealing with our healthcare” Attendee Our main event of the year … Continue reading
Posted in Aniridia Network news, Medical staff talking, Patients' tales, Research
Tagged Conference, Conference 2025, event, meeting
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In memory of Miriam Ibberson
The Art Of Giving In life we all want to do something special, to be remembered for doing or saying it. MiriamIbberson was no different. Born Miriam McKay in 1975 Greenock, Scotland she grew up with purpose, from a young … Continue reading
Q&A with girl with aniridia
Lacey has put out a great video of her answering questions about her life with aniridia. In a rare outing on YouTube Lacey is 18 and studying at university in the UK and one of our members. They responded to … Continue reading
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