UK Keratoconus Self-Help and Support Association

Hello all,

First post here. I'm pretty much coming here out of desperation and seeking advice.

Summary of situation: I have had KC since I was 18. I am in my mid-30's now. Despite terrible vision, I don't seem to require any surgery. RGP lenses do the trick and correct my vision pretty well. Problem is finding a fit. I've been going to the John Radcliffe in Oxford for 6 years now. They still are unable to find me a pair of lenses that are "issue free". For the first 4 years, they couldn't get my left lens to stop rotating (it has miraculously stopped on its own now), but now the right lens (the right eye is my 'good' eye) is causing problems in its fit and vision (blurs when I blink, seems to droop etc.). It seems like you have to insert it a very specific way to get it in just right for good vision/fit. I have spent 30 mins every morning for the past 6 months inserting my lens and it is taking a big toll on me.

I am thinking of going private. JR only offer appointments once every four months - feels basically like they are saying "here is your lens... good luck until we see you next" and the cycle goes on and one. I have been too patient with them. I need a solution.

Please advise and recommend anyone in the Oxfordshire area (or even further beyond).

Sal

Hi, this sounds like my experience when I was still being seen by a high street optician. Fitting became more of a challenge and lenses would slip or even randomly flip out. It sounds like from your description that you have some sort of toric lens that is dependent on the rotational position. I'm not a clinician but it sounds like you need to explore some other lens types.

One of the things you can do is go back to your GP and ask for a new referral but specifically to Moorfields. (In the current circumstances I would guess a GP could sort this over the phone with you.) There probably will be a wait atm for your first appointment but it certainly sounds like you have some issues that need investigating. Plenty of us travel in from 'out of area' for the treatment we need.

Graham

Hi Sal,
We do have a list of optometrists who say they are happy to fit people with KC.
https://www.keratoconus-group.org.uk/in ... ometrists/
The list was compiled some years ago, so some entries may be out of date. But there are two optometrists listed in Oxford that you could try if you want to go down the private route.

If you want to consider a private appt with a KC specialist I'd recommend Sophie at Taylor West, they have branches in different Dulwich, Lewes and Hove

https://taylorwestandco.uk/staff/sophie-taylor-west/

Thank you all for the replies.

I went back for an appointment at the JR. A new optometrist saw me and basically said my lens fit is great but what is happening is that I have tear smears which distort my vision when I blink and the tear passes over my lenses. I guess it is some progress to narrow down what the issue might be but now we have to figure out how to address it. Wish me luck.

Ssl

Well, that does sound like progress. So good luck and do let us know what happens next. It might help not just you, but other people reading this.
All the best.