Category Archives: Patients’ tales

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

Retiring guide dog Sandie

Posted on May 4, 2011 by Beth Dawes

Some of you may remember the daily diary I did on the Aniridia Network International Yahoo group about my guide dog training with Sandie. That little pint sized yellow labrador is now 8 and has been working for just over … Continue reading →

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Taking part in research into aniridia, hearing and memory

Posted on Apr 27, 2011 by James

In the Summer 2010 Aniridia Network UK newsletter there was a call to take part in research into the effect of the aniridia gene (PAX6) on the parts of the brain that deal with hearing and memory. Having done some … Continue reading →

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James’s introduction

Posted on Apr 17, 2011 by James

I’m James, a born (1979) and bred Londoner. I have sporadic aniridia. My vision is (6/24 6/36) and I’m a trustee for Aniridia Network UK. Continue reading →

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Jenny’s introduction

Posted on Mar 29, 2011 by Jenny

I currently live in Devon with my guide dog Jaynie. I was born with aniridia as part of WAGR syndrome. I have most of the associated eye conditions that go with aniridia, including cataracts, glaucoma, nystamgus, corneal thickness/scarring and have … Continue reading →

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Protected: Jenny’s career – Part 1: Entering the world of work

Posted on Jan 30, 2011 by Jenny

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Refferals

Posted on Aug 9, 2010 by Beth Dawes

Last week I went to the Doctors to see about some referrals. The lady was lovely and took lots of time with everyone (which is why she always runs late). I explained where I had been and what referrals I … Continue reading →

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Beth@NIH 11: Results

Posted on Jul 16, 2010 by Beth Dawes

I have a small pineal gland which is usually the case with people who have aniridia. I have low vitamin D levels (probably because I live in England and I don’t go out in the sun much) I have some … Continue reading →

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Beth@NIH 10: More blood and discharge

Posted on Jul 16, 2010 by Beth Dawes

Mary got me up at 5.30am to wee but unfortunately I lack the ability to do this on command so they had to wait until 8am! lol! I had to rest in bed until 7.30 when Shannon came to put … Continue reading →

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Beth@NIH 9: Blood, blood and more blood

Posted on Jul 15, 2010 by Beth Dawes

I had to fast from 8pm and get up and go to the ward early with the last of my 24 hour urine collection. Phew! Nutrition came and tested my body fat and then needed some more information about my … Continue reading →

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Beth@NIH 8: Testing, testing 3,2,1

Posted on Jul 14, 2010 by Beth Dawes

I woke up bright and early and got a latte again. I had to lug over a huge bottle of urine for the end of my 1st 24 hour collection. I had to take it to the mall with me … Continue reading →

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