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Category Archives: Patients’ tales
Ben gets job with Dolphin
Ben who has aniridia has got a job with Dolphin Computer Access a company providing assistive technology including the popular SuperNova screen reading software. He will be a Technical Support Apprentice. Ben says “This is a whole new challenge. I’ll be … Continue reading
Heather’s story of an American in London
Read the first part of this article by Heather written for the Nystagmus Network and published in the 100th edition of their newsletter Focus in October 2013. When my company relocated me to London in 2011 to start their European technical support … Continue reading
Heather’s story of growing up with aniridia in the USA
My name is Heather and I am a 29 year old American. I work as a solutions analyst at a software company completing special projects for our Chief Technology Officer. In 2011 my company transferred me from the USA to … Continue reading
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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Meet-up in Bristol on 5 October 2013
4:30pm, Terrace Bar/Coffee Shop, Bristol City Centre Marriot Hotel, 2 Lower Castle Street, Old Market, Bristol, BS1 3AD RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Bristol to find out more about each other … Continue reading
Posted in Aniridia Network news, Other agencies, Parents' accounts, Patients' tales
Tagged meetup, nystagmus, nystagmus network
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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
Leave a comment
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
