UK Keratoconus Self-Help and Support Association

Hi everyone, im Jai

I hope your all well, I thought I would share my history with KC, having never really spoken about it, I have spent a couple of hours reading posts on this site, which has made me think about KC more then I use to.

I have been with KC for 11 years now, I was diagnosed when I was 22 and im now 33, my condition is 7.00 right eye and 6.50 left eye. I wear rigid lenses and there has been no significant change in the last 7 years touch wood, I realise unfortunately the condition reacts differently and is unpredictable. Before Rigid lenses I was wearing spectacles, but I never found them as effective as contact lenses.

Unfortunately the lenses do dry quickly and make your eyes go red towards the end of the day, I normally remove them and use conditioning solution to keep them wet and pop them back in which seem to work. I also wear the lenses alot about about 15 hours a day 7 days a week.

I have read a few post where some posters have said lenses make the condition worse, however I have never encountered such a problem with my KC being steady, again each case of KC is different, I have regular 6 month check ups at The Institute of Optometry, London, who have been fantastic, and looked after me very well.

I guess I just wanted to say hi, and reach out to other KC individuals, as its easier to talk with people who know about KC, here is hoping,

Thanks
J

hi there Jai and welcome on board, yes it seems it can be very unpredicatable, I was diagnosed with the condition when I was 24, thought nothing about it and was told very little about it and everything was fine for seven years and I managed with glasses, then I was told I was to start attending the hospital for appointments rather than the opticians and there just has been a steady decline for me, three years ago I decided to start wearing rgp contact lenses though so did not want to as my job is dusty, well 15years in to the condition and I have finally hit the cross roads where life is difficult with contact lenses and yet I cant see with out them as you are aware and everybody else on here. I have had to deal with a huge anger problem I have had and still fighting it, without the true help we should deserve had to do it alone, well I am waiting to see the surgern again waiting for his options, as I have told people I know when they ask how we cope, I say exhaustion is a under estimated word, but that is how it feels but we have to go on