London Keratoconus Sufferers Picnic

[tneedham]

Hi
I have just moved to London (Clapham) and wondered if there were any Keratoconus sufferers from london who would fancy getting together for a keratoconic picnic?
We can all bring families/picnic stuff frisbes, games etc.... and spend an afternoon meeting other people with the same condition and chatting about;
* why we cant just wear glasses,
* why we have to sit so close to the screen,
and all other stupid questions people ask us all the time!!
This is open to all the UK but will only be held in London

I have created an event listing for the picnic on Facebook
go to
http://www.facebook.com/event.php?eid=20356948546
to register your interest in going. or email me at: thomas.needham@o2.co.uk

(please let me know what your london park of preference is)

Best Regards

Tom

[rosemary johnson]

SOunds a good idea! - it's a long time since the last London social event.
I'm quite open-minded about which park - I live in East London where all the green open spaces are disappearing under the Olympic Desturction Agency's concrete.
Wherever we chose, there should be someone to decamp indoors in a hurry if necessary - unless you are good at organising the goodweather...?!
Rosemary

[Anne Klepacz]

Great idea Tom! So where are all the other Londoners on this forum? You can't all be sunning yourselves on a Spanish beach!
Anne

[dazzabee]

Big hello here from 'sunny' London.

I think it would be great to meet fellow KC sufferers. I have never met anyone else so it would be good to meet and greet somebody with the same condition as me.

Jay

[tneedham]

2 weekends ago, i was at a jack johnson concert, i had been standing in a line for food, chatting to a couple of girls ahead of us for about 45 minutes when i mentioned that it would be pointless for me to get to the front of the stage as i probably still would not be able to see. one of them answered back with "at last, someone who can appreciate how bad i can see", i asked "why, whats wrong?" she told me that she has 'something called keratoconus'. Wow, what a chance encounter!
This was the first person i had ever met with the same thing, she also had quite acute KC in both eyes and had 3 hydrops cases in her right. (i am currently on the DALK waiting list because of a hydrops).
We chatted for ages and it was great to meet someone who could really understand what it was all about.

the way i understand it 1in 3000 have KC, 1% of those develop Hydrops therefore 1 in 300,000 of the public have both.
The chance of me who has both meeting someone else with both randomly in a queue at a festival is way off the scale

Unfortunately i was the 1st person she had ever met with KC too and she didnt seem to be doing too well with it, she was too scared to get an op in her right eye and seemed like she did not have the support from her doctors that she may have needed. she did not know about this site or the support pages on facebook.
I tried to contact her after the concert but could not find her under her facebook name.

It was this encounter that made me think that we really need to be able to talk to each other, it is only us that could understand what we have to go through on a day to day basis and the emotional and psychological effects KC has on us all.


Therefore the idea for this picnic was born. I just suggest a time, date and place and people can decide to go, or not. No organisation or fees to go along or anything like that, just a completely informal thing where we can all meet up and enjoy the afternoon.

If anyone knows the contact details for Jess Butcher in Bristol, i would be very grateful for them.

Tom

[rosemary johnson]

Wow! That's some coincidence.
I'm impressed you met someone else who's had 3 hydrops inthe same eye - I'm the only one I've ever met who's had that, so interesting to know there is someone else.
NOw, how about this picnic - do you have any dates in mind? Sunday afternoon maybe? - sort of a lateish lunch, maybe 2pm ish??
BTWm are you sure aout that waiting list? DALK?? Shouldn't it be a PK if you've had a hydrops?
Rosemary

[tneedham]

I think you are right. i got the name wrong

[asylumxl]

I'd be up for it, i added myself to the facebook list.

[Andrew MacLean]

Did you have the pic-nic? did it rain?

Andrew

[Jeremy_123]

Just realising Tom left out quite an important detail, well the facebook page says 24th August as the date so not yet to answer your question Andrew.

With everything crossed however and a bit of good luck we should hopefully avoid rain and have that rarest of rare things a sunny summer day in Britain .

Jez.