UK Keratoconus Self-Help and Support Association

Hi,
I've very new to all this stuff....just have some quick questions on how I should proceed.....

Last year I renewed my glasses and couldn't get satisfactory vision with them despite going back to the optician and having the lens prescription changed 3 times. After some investigation I was told I had Kerataconus in both eyes and this was the reason it wasn't possible to correct the vision to a decent standard with glasses. Apparently the steepest curve is at the bottom of my eye. I've been told in the last few months that it is getting worse.....

In the last 4 months I've been trying to wear Sclera contacts. The vision with these lenses is fantastic. It put it into perspective how terrible my eyesight is with my glasses. However, I continually get red eyes after an hour or two of wearing. My eyes remain red, sore and weepy for a few days and then the same happens again. My optician has tried ordering another set with a more relaxed fit, however, the problem remains. He has said that my eyes are obviously not coping with the hard lenses, however, he doesn't seem to have any ideas of further solutions.....

I'm now in the situation where I'm wearing glasses 100% of the time and the vision isnt great. I find driving at night very difficult and this could start to impact on my job. I wear soft lenses for sport but the poor vision is starting to affect my ability to perform well...

How would you experienced people proceed? Should I go to my doctor? Could he refer me to a hospital rather that my high street optician?

Feel like I've reached a dead end.....

Many Thanks for any advice

Andy
34 years old
Scotland

Hi there Andy, welcome to the forum !

First off, while it's great that many High Street opticians will work with Keratoconus patients, sometimes -- and especially with eyes that have complex geometry such as with more advanced cases -- it's experience which is needed to get a good balance between visual acuity and lens tolerance. It's very lucky that the optician you've been to was able to prescribe a Scleral lens, usually daily disposables are within their comfort zone, with RGPs (Rigid Gas Permeables -- another type of lens which can help correct an eye with Keratoconus) being a rarity comparatively these days.

So yes, first thing to do will be to get an appointment with your GP in Primary Care and ask for a referral to a consultant ophthalmologist for a definitive diagnosis. Then, depending on the hospital you go to, you should be able to attend a specialist optometry clinic who can hopefully go through all the lens options with you. I'm very sorry at this point that my knowledge of geography north of the border is so absolutely hopeless, I class anything outside the M25 as almost overseas territory, but apparently there's some really superb facilities available (somewhere called Gartnavel I think is consistently recommended) -- hopefully someone who knows better than I do can suggest some suitable options. Perhaps let us know your rough location, that might help pinpoint where you can ask for a referral to.

Got some more hint's and tip's for when you get your appointment with the ophthalmologist, let us know nearer the time and I'll pass on what I've learnt along the way.

Let us know too if you'd like to be put on the mailing list for our newsletter.

Best wishes

Chris

Hi.
Many thanks for the reply.
I'm based in fife. The place you mention is in Glasgow which is about an hour away but I'd go there in an instant if it got me sorted out

I'll contact my doctor tomorrow and see if I can go the NHS route.

Ive worn soft lenses for years without any issues but I've had such little success with hard lenses it seems like I'm wasting my time!! I would have given up ages ago if the vision I get with them wasn't so good....

I'm keen to try "hybrid lenses" as they seem to be easier on the eye

Thanks again - glad I stumbled across this place

Andy
Ps please add me to the mailing list - cheers

Hi Andy,
I'm the one who sends out KC Group info, so if you e-mail your postal address to anne@keratoconus-group.org.uk I'll send you our information booklet on KC, a DVD with more info and some of our recent newsletters. You'll then receive regular info from us (including dates of meetings for Scottish members in Edinburgh or Glasgow).
All the best
Anne