Category Archives: Parents’ accounts

Bringing up children with aniridia and the feelings it generates.

1 mile open water swim in aid of aniriida

Sunday 16th February 2014… 12.30pm I got the phone call I had been waiting for. My sister, my best friend had gone into labour and was due to give birth to my nephew. As a mother myself having given birth … Continue reading

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Visiting Disneyland with aniridia

Earlier this month Laura asked on the Aniridic Family Facebook group “Has anyone visiting Disneyland Paris been able to get a priority card for a child registered blind? Our son Josh is nearly 8 years old. He is not great … Continue reading

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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

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Protected: Mark and Harry: Our Journey With Aniridia presentation

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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

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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

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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

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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

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Protected: A mother and son’s perspectives of aniridia

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Posted in Parents' accounts, Patients' tales