Meeting on 17/3

[Jezzafletcher]

Really sorry that I couldn't come to the meeting on 17/3 - how did it go? Will the next newsletter cover the highlights? Hope those who made it had a good time!
Jez

[Anne Klepacz]

Shame you couldn't be there, Jez. But there was a good turnout, and a fascinating talk from Colin Willoughby about the research his team is doing in Belfast. Although I have to confess I had trouble following all the science, what was clear was how much the research is shedding light on the biomechanics of KC. And greater understanding will potentially bring new treatment options in the future.
We were also inspired by the speaker from Fight for Sight, the charity which does a lot of funding of eye research - I'll put something more on the forum about that later this week, when I've caught up with everything else!
Colin promised us a summary of his talk, so yes, we'll include that in the next newsletter.
Judging by how long people stayed around afterwards chatting, I think they did have a good time! Hopefully see you at the next meeting later in the year.
Anne

[Jezzafletcher]

Many thanks for the update Anne. I look forward to the Newsletter too... I would really hope to make to the next meeting - can you confirm the date and venue please? A complete longshot...but do people who have KC ever try and link up when they have a Hospital/Clinic appointment? Just a complete longshot .... Is anyone at Clinic 4 ExtD at Moorfields on 18/4? Would really like to meet someone else with KC and I get a bit tired of small talk with whichever poor person has to sit captively next to me - luckily my vision isn't quite as bad that I try to talk to the fish tank but I could tell you an embarrassing story about me chatting to someone who was clearly looking at me and interested in what I was saying... Until that is the point when I realised that it was a mug shot on the front of the newspaper being read by the person next to me... Anyway - if anyone is at Moorfieldskeith on 19/4 give me a shout on here otherwise I will have to continue as billy no mates!!!

[Anne Klepacz]

There isn't a meeting fixed yet, Jez. The next London one won't be till the autumn now. We'll announce it here and in the next newsletter in the summer.
My next Moorfields appt isn't till the end of May - but I hope you'll find someone else who is going when you are.
Anne

[Jezzafletcher]

Hi all - i needed a few days to recover from staring at the fish tank in Clinic, gawping at other blurry people in Refraction, gazing at walls in the laser clinic etc etc before posting on here!!! Sadly no one else with KC seemed to have had an appointment that day... Oh well. I wanted to check out other peoples experiences - hoping someone else (well not really hoping as i wouldn't want this happening to anyone else as it's a bit irksome) can give some words of wisdom/experience... The Keratotomy on my grafted cornea has not really worked - the cornea graft is still so really badly out of shape that in combination with my recent friend called "dense cataract" no measurements were successfully achieved. I am booked in for cataract and lens removal later in the year but the prescription lens that they are going to insert is going to have to be a "best guesstimate". Icing on the cake...? Nope... To cut a long story short...That came when I was given 2 collapsible "signal" white sticks & started the process of Registering as Partially Sighted. What a bummer. I don't want people to read this and be put off having a graft - I always knew with my severity that it was a long shot. Furthermore the graft is looking very healthy but nonetheless I do feel as if I have hit a bit of a brick wall... Come on someone - please tell me that there is life & not tea and sympathy after white sticks!
Jez