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Category Archives: Patients’ tales
A mother and son’s perspectives of aniridia
Thirteen and a half years ago, if you had asked me what Aniridia is, I would not have a clue. But an event which happened in 1999 changed all of that: my son Daniel was born. The first few months … Continue reading
Posted in Parents' accounts, Patients' tales
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Review of Aniridia Network UK Conference 2013
By Sarah Conference 2013 was the first Aniridia Network UK (ANUK) conference that I had attended. I had quite an intense experience as I was there in both personal and official capacities – having aniridia and being part of the conference … Continue reading
Solar sneezing – effect of light on the nose and brain
I have aniridia and I noticed that when exposed to brightness, particularly sunlight I sneeze within a minute. While taking part in the National Institutes for Health research I took the opportunity to ask Dr Han why this might be. … Continue reading
Juggling with aniridia
Harry, who has aniridia, has learned to juggle. We recorded the two videos below, one year apart, of him showing off his skills. He’s pretty good. Harry’s acuity is 6/36 which is near the top of the range reported by … Continue reading
Jenny and other blind people are let down by bus companies
ITV West Country News interviewed our member with aniridia – Jenny – who says she frequently misses her stop because there are no automated stop announcements on buses. The charity Guide Dogs for the Blind is calling for audible announcements … Continue reading
Protected: Woman with aniridia is first to get new corneal stem cell transplant in UK
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Posted in Medical staff talking, Patients' tales, Research
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Protected: Life with aniridia by Ben and Lois
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Melatonin and sleep
Katie has recorded some points about melatonin, a supplement which some people with aniridia and other conditions use to aid their sleep. Note: Katie referred to the pituitary gland when she meant the pineal gland. Jenny has previously told her … Continue reading
Dear David Cameron: What life is really like with aniridia and on benefits
Today government plans for the biggest shake-up of the welfare system for decades come in to force. Hundreds of thousands of households across the UK will be affected by the changes to benefits. An article in the Mirror last autumn featured … Continue reading
Protected: Jenny’s career – Part 4: Preparing for work
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Posted in Patients' tales
Tagged Access To Work, benefits, career, guide dog, mobility
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