UK Keratoconus Self-Help and Support Association

Hi Everyone! My name's Jake, i'm 23, from the UK and yesterday got the shock of my life finding out I had KC! Yesterday I sulked and felt sad for myself, thinking i'll definitely go blind in the future etc. Today i've snapped out of it and figured almost everyone has health problems they have to deal with, and so should I!! I last had an eye test in 2005 and my right eye was -2, now it's -9 so pretty quick deterioration. My left eye is not really affected but is slowly getting worse. I have been told glasses can't do anything for this and i'll need RGP lenses. I have a few questions if that's ok?

1. I've been told it can take around 6 months to get the lenses. Is that correct in others experience? I'm based in Gloucester if that helps. Does going private speed things up? Any idea of price?

2. Is vision correction immediate from the lenses? I've been told it 'flattens' the cornea? I'm anxious to start driving lessons!

3. I sometimes work 12ish hour days, can I wear the lenses for that long?

Thanks for your help in advance guys

Hi Jake and welcome to the forum,
Contact lenses usually improve the vision a lot for people with KC. Getting fitted with lenses through an NHS hospital clinic can take several months (it's usually a couple of months to get the first appt!) but hopefully not as long as 6. And to start with, you need to build up wear time gradually over a few weeks. Wear time varies from person to person, so you might be OK for 12 hours, though it's not a good idea to overwear lenses at the beginning.
Getting lenses privately is certainly quicker but more expensive. Through a hospital clinic you'd get lenses at the NHS price of around £53 per lens (and that payment covers any changes in prescription in a 12 month period). You'd need to get your GP to refer you to hospital. Privately you'd pay at least twice that amount. And you'd need to make sure that you went to an optometrist who sees people with KC regularly and is expert at fitting KC lenses (which a lot of High St optoms aren't) as badly fitting lenses could damage your eyes.
As you've probably been told, KC varies a lot in how much it progresses from one person to another and usually stabilises eventually. So most people can get on with their lives with contact lenses even if they are a nuisance at times!
If you e-mail your postal address to anne@keratoconus-group.org.uk there's an information booklet about KC and a DVD of our 2009 conference which covered the current options for KC which I can send you. Good luck!
Anne

Hi Jay,

First, as Anne says, to get to an NHS clinic you need to be referred onwards by your GP but I am guessing that your optometrist is already doing this? Time for this to happen can indeed take up to 6 months, depending on location in the UK.

Going privately can be immediate, though you will have to pay full market price for your contact lenses.

Lenses do NOT have to be RGP and flattening the cornea is also NOT the desired effect. The aim of contact lenses is to correct the vision by making the front of your eye, the cornea, more regular. This can be achieved by a range of contact lens types including: RGP, Intra limbals, semi sclerals, sclerals and soft lenses. In fact, if your Keratoconus is very mild, even conventional soft lenses may work.

You should also know that there are several surgical techniques to improve corneal shape and retard KC progression, Corneal Collagen Cross Linking (CXL) being one of them. You can search on this forum and on the internet for information on these procedures. CXL is not currently available on the NHS.

There is a list of practitioners here who offer private services and who will also be able to give you general advice about keratoconus.

The main thing is NOT to panic and to research as much as you can!

Lynn