NEW TO THIS WEB SITE

[mrs karen sedgwick]

HI , MY NAME IS KAREN, I HAVE HAD KC FOR 5YRS, HAS ANYONE ELSE HAD THE SAME EXPERIENCES AS ME ?, I TRIED HARD CONTACT LENSES BUT WAS INTOLLERENT, THE HOSP OFFERED ME NO ALTERNATIVES, APART FROM A CORNEA GRAFT IN BOTH EYES IN APPROX 5YRS,I WAS THEN DISCHARGED I SUFFER ON A DAILY BASIS FROM LIGHT SESITIVITY,AND WEAR A HAT MOST OF THE TIME, THE HOSP NEVER OFFERED ME ANY INFO ON KC .I AM SO GLAD THAT OTHER PEOPLE BESIDES ME HAVE SOME OF THESE PROBLEMS.

[Richard Godbolt]

Hello Karen, you are very welcome to this site which I know you will find extremely helpful.
I was sorry to read about your problems and am surprised that you were given no information or offered alternatives to the hard lenses you tried .
Did your hospital suggest Rose-K's, soft-perms, sclerals, piggybacks etc etc ? If not, these are some of the other options you can consider and there will no doubt be contributors to this site who can tell you which of these worked for them.
In my case I recently suffered intolerance to lenses and to light after over 40 years of wear and tried a variety of options until amazingly I found the right combination of piggybacks ( in case you are unfamiliar with these they are hard lenses worn on top of soft ones - the soft lenses effectively act as a cushion for the hard ones )Just two weeks ago I could only get an hour or so of comfortable wear -occasionally!- but after trying different soft lenses I can now go all day with ( touch wood ) little problem.For me its nothing short of miraculous and I am sure there will be many such options for you to consider to help you to overcome your problems.
I suggest you get as much info from this site as you can and arrange to see your specialist again to see what else can be done for you. There are many excellent contributors here who either suffer from or treat those with KC and I know you will find it very helpful.
Good luck and welcome to the club!

[GarethB]

Hi Karen,

Light sensitivity is quite common an I need to wear sunglasses in doors most of the time when I have my lenses in and extremely dark glasses outside. Even then, sunny days like yesterday are getting a bit bright for me.

As far as lens intolerance goes, in addition to Richards comments, I have found only one type of solution works and then I have to use comfort drops. There are many on the market and people on this board and I too from personal experience would recomend Systane. I became lens intolerant and had to go nearly a month without them to let my eyes heal. Rather than pay for the rpescription charges, I use systane that actually works better for me and I have gone back to being able to wear lenses all day.

When I became lens intolerant could not get lenses in due to the redness of my eye and the inflamation of the eye lids. Month and a half on and so far so good.

Regards

Gareth

[Drew Radcliffe]

Hi Karen

I used to live in my baseball cap because of light sensitivity. I then found that I could get away with a good pair of wrap round suglasses - currently using Oakley's and bought them from vision express.

I am intollerant to soft lenses because they dry my eyes out too quickly and I can't wear corneal lenses like Rose k's because they hurt too much and I don't get good correction with them

I have had some limited success with Scleral contact lenses they are comfortable in comparison with corneal lenses. I am working with my lens fitter for an improved solution to the one I currently have.

Good Luck and ask us lots of questions

Drew

[Susan Mason]

Hi Karen

I take it you haven't had the graft yet? Doesn't seem like a good response you got from your hospital maybe you could do with a second opinion.

I have known I had KC since Nov 2000 and at first managed quite ok with glasses although a complex prescription. By May 2002 things started to change and I was told I needed to move to RGP corneal lenses. This didn't work for me and after about 9 months trying various fittings etc they moved on to trying scleral lenses. These worked ok for about 12 months and then refittings started to be needed. First the left eye then the right one and now again the left eye.
Things have been pretty gloomy at times and I often wonder when things will get back to near normal. Everything seems to be quite a challenge, maybe I am just a difficult case, who knows?

As for light sensitivity, yes it's sunglasses and hats/baseball caps for me too.

best wishes

Susan

[mrs karen sedgwick]

HI, THANKS FOR YOUR REPLIES, UPDATE CONTACTED THE HOSP 4 AN APPT, TO DISCUSS MY CONCERNS, 6TO8MONTH WAITING LIST, PATIENCE IS A VIRTUE.

[Helen Turner]

I'm surprised at your waiting time. I'm nearly on my specialist's christmas card list , ha ha ha i spend so much time there. I must say they are pretty good at my lens place - big thumbs up to Hull Royal Infirmary. I can usually get an appointment within a couple of weeks if i need to or they'll always try and fit me in as an extra.
Glad to hear about other people with light sensitivity.Sorry, not how it sounds.When wearing my PMMA sclerals i couldnt look out of a window on a sunny day with out being blinded by the sunlight. Forget going out in them! Nightmare. I was tried for an eye test in hard scleral lenses last week and couldnt open my eyes even under flourescent light.
Fingers crossed RGP sclerals may be a bit more resistant.
My partner - bless him got me some Ray Bans to help me with my intolerance to light. They're polarized lenses which i find takes off more of the glare off especially car windscreens and glass.
I have to laugh really, otherwise i'd cry - but i've got the whole intolerance to light now with my fair hair, pale skin and warped eyes. Ha ha. Doesnt stop me going to far away places though. India twice, next stop Thailand or Sri Lanka.