The London meet up was surreal. Of the 14 people who turned up, so many of them were so like me.
In one evening, I learnt so much about a condition I’ve had since birth. For the first time in my life I feel I have peers who understand my condition, in many cases a hell of a lot better than I do. For the first time I felt supported. It was a really strange experience.
But it doesn’t come without a bit of hard graft. I’ve agreed to help with the Aniridia Network UK membership database!
I always knew that aniridia was, a genetic condition related to a defect in some genes. But I had, wrongly, assumed it only affects the eyes, in particular the iris – but it doesn’t.
There is an even rarer condition called WAGR/11p Deletion Syndrome (which if a child has aniridia it should be tested for) which has additional complications including kidney tumours. It is so rare there hasn’t been that much research into it.
Another, un-proven, but suspected link, is that those with aniridia may have issues with hearing (audio processing difficulties). It mainly, affects conversations in busy environments, where the individual hears what someone says but can’t interpret it properly. Wow, I suffer that all the time! I had put it down to people mumbling, but now it might be to do with my aniridia mutation/deletion.
I found out that the scarring that I have on the cornea is pretty common for those with aniridia. I also spoke about seeing flashing blue bolts of lights passing through my eye, Some people there said they had experienced something similar.
Compared to some of the others who have had lots of eye operations, I need to count myself extremely grateful that I have not.
Also, and this is purely my own observation, but I think that my gene defect seems to create individuals like me. I was seriously out ‘geeked’ by some of them. Heather, who is an American living in Woolwich, works on a technical support helpdesk for a software company. James, who lives up in Walthamstow, is a website developer. Andrew, from Birmingham talked about building computers all night. The others were less technology focused, but all seem to have quite logistical and organised personalities. It was so strange.
So, a really interesting night.
My friend Adam appeared to enjoy it although he’s not a restaurant man. He managed, god only knows how, to just drink 3 bottles of beer in 4 hours – but nearly passed out at the £14.50 cost! If that wasn’t bad enough, he was stunned when they charged me £33.50 for 4 beers, and fish and chips. Pretty tasty though – and a restaurant with good lighting.