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Category Archives: Patients’ tales
Aniridia doesn’t stop Jessica doing all kinds of sports
ByJessica I am 21 living in London, have partial aniridia and have never let it stop me from any kind of sport. know some people get worried about sporting with an eye condition like this and am fully aware that … Continue reading
Lois leads England Women Blind Cricket Team
Lois who has aniridia is captain of the England Women’s Blind Cricket Team. They are currently on tour in Nepal. Before they left, she and others were interviewed by BBC Radio 4 In Touch The Nepalese cricket team inspired the Cricket … Continue reading
Beth’s experience of research into development of sighted babies of visually impaired parents
Beth, who has aniridia, and her sighted son Edward are taking part in research into his development. Researchers want to know how having a visually impaired care giver affects babies. Beth says she can “highly recommend taking part” so we recorded … Continue reading
Teenager with aniridia coaches other disabled children
Lois, 16 who has aniridia has been made a lead sports coach by The Change Foundation. She is teaching others to play cricket The Change Foundation believes in changing lives through sport and are running a project that gives disabled … Continue reading
Tracy with aniridia talks of her job as an Eye Clinic Liaison Officer
Here’s a recording of an interview with one of our members who has aniridia. She has recently started work as an ECLO, providing information, advice and practical or emotional support on living with sight loss. The interview is by VI … Continue reading
Posted in Other agencies, Patients' tales
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Questions & answers on aniridia
Session at Aniridia Network UK Conference 2014 By: Panel of experts and individuals affected by aniridia A chance to ask that question that you always remember on the way home from your appointment or that there never seems to be … Continue reading
Living with aniridia – A generational perspective presentation
Session at Aniridia Network UK Conference 2014 By: Mary Cox Mary Cox, her father, and her two daughters were born with aniridia. 2014 was the centenary of her father’s birth. In the previous 100 years understanding and treatment of the … Continue reading
Mark and Harry: Our journey with aniridia presentation
Keynote session at Aniridia Network UK Conference 2014 There was no history of aniridia in the family, but when Harry arrived their journey with aniridia had begun. This session is a personal account of learning to deal with Harry’s aniridia … Continue reading
Posted in Parents' accounts, Patients' tales
Tagged Conference, Conference 2014, event
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Cornea Connect brings researchers and patients together
Researchers into aniridic keratopathy held a event so they could meet people affected by the condition so they could learn about each other. Corneal opacification affects people with aniridia because of deficiencies in the eye’s limbal stem cells. The Cells … Continue reading
Posted in Aniridia Network news, Other agencies, Patients' tales, Research
Tagged Limbal stem cells
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The differences between having some useful vision and not having any useful vision
By Jenny Having already been severely sight impaired, I’ve recently lost a significant amount of vision. There are things I can still do and some I almost took for granted that I cannot do now. There are other things I … Continue reading
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