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 tumour (a childhood kidney cancer) every 3-6months until I was 12 years old. The Dr’s told me they were looking for crumpets so I always tried to make sure I had eaten them before I went. Apart from medical appointments and knowing I was ‘different’ I didn’t take any real interest until I was 16. I was bored at college and type it into Lycos and found my friends Hannah and James. In 1998/1999 the yahoo group had just 18 members. Meeting Hannah, James and Katie was like the bit of the jigsaw I never knew was missing had slotted into place. People who liked to sit in the dark, wore sunglasses whatever the weather, peered closely at print and felt clothes before looking at them.
Tomorrow myself Jenny, Katie and Craig from the Aniridia Network UK committee will be going to Edinburgh to take part in a conference of medical professionals talking about aniridia and it’s other effects. I’m excited as I’m fascinated by the genetics side of things.