Category Archives: Medical staff talking

Their research or appointments with patients

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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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

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Posted in Aniridia Network news, Medical staff talking, Parents' accounts, Patients' tales, Research, Welfare experts advising | Tagged , | 1 Comment

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

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Knighthood for member of our medical panel

Professor Peng Tee Khaw, a who sits on the Aniridia Network UK medical panel, was awarded a knighthood in the Queen’s 2013 Birthday Honours. The consultant ophthalmic surgeon received the honour  for services to ophthalmology. At the Aniridia Network UK … Continue reading

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Protected: Woman with aniridia is first to get new corneal stem cell transplant in UK

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A rare glimpse into the ordinary

The National Institutes Of Health have published an article and video about their study in to obesity and WAGR/11p deletion syndrome. It features Aniriida Network UK trustee James who took part as a ‘aniridia only’ patient. You can also read … Continue reading

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Protected: Presentations from Conference 2012

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Invitation to the Oslo Aniridia Conference

Aniridi Norge (the Norwegian aniridia association) has organised the first European scientific conference about aniridia as well as an international gathering for the aniridia community. You are invited between 8 and 10 June 2012. James and Katie from Aniridia Network … Continue reading

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Dr Agarwal describes using a glued iris prosthesis

Ophthalmic surgeons have described various techniques to fix iris deficiencies. For the most part, these improve the patient’s visual quality. In this column, Dr Agarwal describes a surgical technique of using a glued iris prosthesis, namely a PMMA aniridia intraocular … Continue reading

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Fact check on Daily Mail piece about teenager with WAGR/11p deletion syndrome

A recent Daily Mail article aroused our interest. The piece features Gemma who has WAGR, also known as 11p deletion syndrome after its genetic cause. It includes aniridia among its possible symptoms. We were glad to see a national newspaper … Continue reading

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