UK Keratoconus Self-Help and Support Association

to John and Robert,
All the very best to both of you for your grafts this week. Will be thinking of you. Please let us know how you are doing as soon as you feel like logging on.

Good Luck
Janet

After what seems like an eternity D-day (or should tht be I-day) approaches.
Thank you very much Janet for your kind wishes - I am a little apprehensive to say the least - probably partly brought about as this will be my first time ever in hospital - feels like I am going in at the deep end.
Hope all goes well with you John - two Smiths in one week - perhaps it is hereditary! I normally keep a diary and will try to keep it up over the next few weeks. I will also try to keep in touch over the web site and let you know what is happening - if nothing else my wife, Ruth, can take down dictation!!!

Best wishes to all for the New Year

Robert

Hi Robert,

Came across this discussion group by accident.

I had a corneal graft about 6 years ago and I was apprehensive about it beforehand as well. Everything went fine and I was home after 2 days. I was off work for 3 weeks - I would recommend book tapes for the boredom!

My eye sight is definitely better than before - I wear glasses now, not contact lenses. i definitely don't regret having it done.

Anyway, good luck

Rob

Out of Office AutoReply: Keratoconus

I am on leave until Monday 14 January but my email will be checked each day for urgent messages. Please call Jane Lewis on 01733 895238 if you have any queries while I'm away.

Hi,

Finally, I've tracked down a UK-based group - excellent!

I was hoping someone might be able to help me track down a good KC specialist in my area.

I originally had KC diagnosed by a chap in Australia who was excellent, and seemed to be a speaker on the topic (John Mountford).

Since coming back, I've struggled to find someone who has his flair/knowledge to visit on a regular basis. I've seen three people in Surrey/Berkshire - who supposedly were up on KC - and been very dissappointed with their apparent lack of nouse on this particular eye condition.

Today this became a major issue because I went to put one of my lenses in, and it was agony. It took me a few minutes to get my eye open enough to take it out! Since then, my left eye is hurting like crazy and I obviously need to see someone as my job requires, er looking at a PC.

Could anyone possibly point me in the right direction? I'm actually looking for someone who I could see in Leeds this week (travelling on business) - but also at home in Berkshire from then on.

All help welcome, thanks in advance.

Andrew.

Hi Robert,

I'm a little late to wish you good luck as I think your op is today; but I certainly wish you (via Ruth's reading) a speedy recovery.

Thanks also to Janet for her best wishes. Like Robert, I'll try and keep a diary and (when my vision returns) keep everyone posted.

My graft is tomorrow, so I probably won't be around for a few days(!) All the best to anyone else who's as apprehensive as I am right now.

John

Dear John,
Try not to worry, you'll be fine! Remember the anticipation is far worse than the reality! I could 'see' as soon as the eye patch came off the following day, though the lids were a little swollen.
The exciting bit is when you get to having the new lens fitted in about 6-8 weeks. It's only then that you know the real outcome - what correction you are going to get. It's a great moment when they put that lens in your eye!!
Till then, rest your eye, let it heal. Listen to tapes and music and relax.
Good Luck
Janet

Yesterday I went to hospital and have been given piggy back lenses - just wondered whether anybody else had these and the reasons they were given them. I cannot tolerate the rgp due to my allergies. What will happen if these don't work does anybody know. Have been told that if I can't wear contact lenses will have to have a graft in my left eye. Would be very interested to hear from people who wear piggy back lenses

A message for Andrew Walker
Am not sure where in Berkshire you live, but can recommend the Oxford Radcliffe Hospital Eye Department as a possible place to find someone, if it is not too far from you. They have several people with lots of knowledge and experience of dealing with KC. Good Luck

It is quite refreshing to join this Group as I am yet to ever meet anyone who suffers from KC apart from family members. I was born in Cyprus and I have been in the UK for a number of years as I attended my University studies here. Having being an employee for a while, my KC condition has forced me to become self-employed as my eys have a relatively low tolerance of lenses.

My vision has recently diminished even with lenses to the extend that I am now considering a transplant. I would love to talk to anyone out there who has actually gone through with it to discuss. Pls ring 0161 445 5506.

I have just discovered on the net that Karaform might be a non-transplant solution to KC and it is currently going to be tested in the US. It is basically a process that reshapes the conical conreal rather that replace it. Pls use your web search engine and let me have your views. Does anybody know whether Keraform is also going to be tried in the UK?