Category Archives: Patients’ tales

Patients’ tales of success or struggle with doctors, school, work or social lives

Beth@NIH 2: Admission day

I woke up feeling a lot brighter and set off to the hospital to be admitted at 7.15am. It is only a 2 minute walk to the hospital from the lodge and I get the feeling you are supposed to … Continue reading →

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Beth@NIH 1: 4,000 miles and 3 countries in 24 hours

I set off on my travels to the NIH. Armed with my pink bags and my white cane I set off in a taxi to the airport. Once I got there I though I wouldn’t need any assistance from the … Continue reading →

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My left hand girl has gone on her jollies while I go to NIH

I always have enjoyed reading the medical literature about the other effects my genetic deletion (PAX6) has on the body apart from the eyes. I was also interested to see the similarities and differences between just having aniridia and having … Continue reading →

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Edinburgh Aniridia Conference

On Wednesday evening Sandie (guide dog)  and I met Katie, Jenny and Jaynie (guide dog) on the train up to Edinburgh. As always we talked non stop catching up on the news despite chatting on MSN very regularly. Sandie and … Continue reading →

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Beth’s introduction

I was diagnosed with aniridia at 3 months old as I wouldn’t open themnfor the Dr when he did my checks just after I was born. In those days genetic testing wasn’t as advance and I was screened for Wilms … Continue reading →

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