London meet up: A personal review

James and Keith sitting at a table opposite each other

James (left) and Keith (right)

By Keith

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.

Advertisements

About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
This entry was posted in ANUK news, Patients' tales and tagged , , . Bookmark the permalink.

4 Responses to London meet up: A personal review

  1. Pingback: London meet-up review: A big success | Aniridia Network UK

  2. Andrew Edwards says:

    After reading Keith’s post, it got me thinking again.
    His post reminds me a lot about me when i came to the AGM.
    By the age of 40 (at the time). I thort that i managed my condition prity well and did not expect to find out any thing new.
    But then meet ing peaple with the same condition and chatting then finding out about the APD thing.
    Then at the Social event chating to others and finding my self helping peaple to understand and encuraging them.
    Keiths post got me thinking at may be this is more the road that the Charity should be taking.
    As has been said, their are mutch bigger and better placed charitys to finance and promote Treatment and Reserch.
    Yes the charity needs to keep a finiger on the pulse and conected to the other charitys and societys.
    But i feel that as a small orgernisation, the Social meeting could give Help and Support to peaple as mutch as any thing else..

  3. Pingback: London meet-up 2012 | Aniridia Network UK

  4. Pingback: Meet-up in Bristol on 5 October 2013 | Aniridia Network UK

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s