Today is the rarest of days , so what better day to raise awareness of rare conditions and the people that live with them every day.
I am 1:47,000 which makes this 1:1401 day (365×4+1) sound common.
What makes me so special?
Aniridia, a from birth genetic eye condition, I don’t have irises (the coloured part of the eye) and I was born with low vision that cannot be corrected with glasses. Although I wear them because I’m lucky enough to be long sighted too.
Being rare has its pros, I’m never lost for a conversation starter.
But it can also be lonely, although genetic I did not inherit Aniridia from my parents (which makes me even more rare) so I had no relatives with the condition, I went to a main stream school and statement of educational needs were relatively new . Before most visually impaired kids went to special schools, so I was the only one I knew with black eyes. Sometimes people would say that they were brown but I did not like this as it wasn’t true. I was the only visually impaired child almost, if not all, my teachers had taught
I was the half blind girl, the one with the worst vision. No one saw the world I did
I was the only one to wear sunglasses all year round because I am very sensitive to light, particularly sunlight.
I am always a medical curiosity doesn’t matter what type of doctor it is they will find a reason to have a look in my eyes. I have even been asked when taking my girls to appointments!
It’s lonely because there’s no one else who knows what it’s like to be you, nothing to compare yourself against.
When I was younger I imagined other people with aniridia, they all looked like me because I had no other comparison.
One day in 1997 when I was 17 I was bored and had a new computer with that new internet on it. I searched ‘aniridia’ not very hopeful to find much. I think it was about 900 results. Over a number of weeks I went through each one.(I had way too much time on my hands in those days). I bought myself a medical dictionary, read biology text books until I understood all the medical reports. I found out a world of info on Aniridia I had not known before.
I also contacted everyone who had ever written in a forum asking about aniridia. I developed a network of friends affected by Aniridia both people with aniridia and parents with children with aniridia. I eventually set up a Yahoo group to help us all communicate with one another. I also set up a website with all the information I had found.
The group was internationa but through it I found Beth and James and we met up for the first time I saw myself through other people’s eyes. I learnt my vision is on the good side of average for people with aniridia I didn’t have the best or worst vision, I made life long friends (hopefully!?) and my self confidence grew because I understood how I fitted in.
In 2000 Beth and I set up Aniridia Network UK, just teenagers at the time.
When I had my first daughter I had to stand down from the ANUK committee but I knew the others would keep it going and I am glad that it continues to grow and support people with aniridia,