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Category Archives: Patients’ tales
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
4 Comments
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
Doing karate while visually impaired
By Elliott, 14 For a lot of my life martial arts been on the list of things I wanted to do. It all started when my mum was walking me and my sister home from school, when leaflets about karate … Continue reading
It’s tough to be different -The Adventures of Zip and Mike
Being born with aniridia, I’ve spend most of my life discovering that people often know who I am long before I ever meet them. Word would spread quickly around the schools I attended and the places I went, and I … Continue reading
Posted in Patients' tales
1 Comment
50 years with aniridia
To discover that your child has been diagnosed with Aniridia is upsetting and stressful. In 1964 it was devastating. Diagnosis: blindness, prognosis, no hope. I have read my recently deceased mothers diaries and her hopelessness, despair and unfounded guilt are … Continue reading
Posted in Parents' accounts, Patients' tales
3 Comments
Protected: James’s jujitsu blue belt and self-defence for the visually impaired
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Aniridic Family group on Facebook
To get answers to questions on aniridia and meet people affected by it, a great resource is the Aniridic Family group on Facebook. It has over 500 members from all over the world and is still growing. Anyone can start … Continue reading
