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Category Archives: Parents’ accounts
Raising kids is hard enough, so how do mothers with aniridia cope?
Teri I was born severely sight impaired, so I’ve never really known any different. When I was a young woman in my twenties my condition was stable. I was pretty independent: I had a job, as a bank clerk, and a … Continue reading
Posted in Parents' accounts
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Diagnosis difficulties – a father’s success
Three years after complaining that his child was not diagnosed with aniridia until she was a year old, a dad has spurred change that could prevent it happening to others. Fuad’s campaign has led to the NHS recognising that in … 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
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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
Conference 2013 – a parent’s review: ‘Good Vibrations’
By Susan, the parent of a 4-year-old daughter with aniridia and WAGR/11p Deletion Syndrome. I am so glad I went to this year’s Aniridia Network UK (ANUK) annual conference. I had almost decided to give it a miss but it turned … Continue reading
A parent’s experience of our befriending scheme
To mark Rare Disease Day 2013 we have a story of just how incredibly helpful it is to bring people affected by a rare disease together. A parent contacted our befriending scheme last November. She has two children, the youngest being … Continue reading
Meet-up in Newcastle 24 February 2013
People in North East England affected by aniridia came together in on Sunday 24 February for lunch and chat and fun. The lunchtime meet-up was in Zizzi in Metrocentre, Newcastle Partners, family and friends of people affected by aniridia were all … Continue reading
Posted in Aniridia Network news, Parents' accounts, Patients' tales
Tagged meeting, meetup
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Watching TV
Recently a parent put the photograph below on Facebook and asked “Does anyone with or child with aniridia sit this close to the TV to watch it?” There was a great set of responses, from all over the world, which … Continue reading
