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Category Archives: Patients’ tales
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
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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
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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
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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