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Category Archives: Parents’ accounts
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
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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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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Open letter to anyone with a child recently diagnosed with aniridia
I am writing this to give reassurance and a firm (but virtual) shoulder to lean on. No doubt you have just returned from the hospital, numb with the news that your child has been diagnosed with a rare eye disorder … Continue reading
Posted in Parents' accounts
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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
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
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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
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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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