UK Keratoconus Self-Help and Support Association

Hi All.

Newbie to the forum, but not to KC. I was diagnosed thirty years ago (47 now ). Up until recently I have got on well with RGP lenses. Apart from the usual trouble with dust I had no major issues. With the help of a private optician we have kept the level of vision satisfactory. Things have got worse over the last six months . With the vision going off, a higher than normal sensitivity to light and discomfort from the lenses. Visited the optician today and all though both fits are OK we could not get the vision corrected. So he has referred me to the LRI (last visted 25ish years ago). Not sure what the future holds after all this time (well I know what the possible treatments could be ). So is there anyone being treated at the LRI and how do you find the "service"

Thanks in advance
Ian

Ian

Welcome to the forum. I don't know your hospital, but we will all be thinking of you as you wait for your appointment and then attend the clinic.

Andrew

Hi

I am under Leicester Royal, had appointments there for the past 20 yrs (ish) under Mr Prydal at present, but previously Mr Sandford-Smith. I have had a Graft & recently Intacs for the other eye. I have also had contact lenses from the hospital. Most of the time the care has been excellent, just occasionally they are lacking staff or time but I guess that happens at most hospitals.
If you want to pm me you're welcome to do so, good luck with your appointment

Helen

Thanks Helen

It was Mr Sandford-Smith who I was under more years ago than I care to remember . I was feeling a bit sorry for myself over the weekend. Having KC for thirty years I thought I had it cracked. My aim has always been to stay away from having a graft for as long as possible in the hope that a techincal advance would come along to save the day. Hopefully I am jumping to conclusions and they will be able to do something lens wise, time will tell.

I warned my employer this morning that I will need time off for appointments etc and handed them the employer fact sheet of this site (thanks very much all). They are fine about it but i felt the need to expalain why my right eye is so blood shot occasionaly and I appear to be crying in the afternoon.

Like most people I find that people think you can just take a lens out and pop on a pair of glasses, if only it was that easy. Anyway onwards and upwards. Chuff all you can do about it

Ian

To the best of my knowledge LRI are also fitting the latest soft lenses specialy for keratoconus. I have found that since changing from RGP lenses due to sensitivity to both light and the lenses that I am no longer light sensitive and ca now wear my lenses for as long as I am awake. A few weeks back I was a guest at a contact lens confrence in Holland an ended up wearing my lenses for 19 hours straight over three consecutive days an for the past two weeks 16 hours straight and no porblems at all. The vision I am now getting is 6/4 which is one line better than I managed with RGP lenses.