UK Keratoconus Self-Help and Support Association

I had my first pair of glasses when i was 15 as from the back of the class at school reading the board was quite a chore, later i was diagnosed with KC when i was 17, though my vision wasn't at all terrible i was still studying at the time and needed to see as well as possible. i was given some small rigid lenses that proved to be very uncomfortable but did correct vision. the consultant at the eye infirmary told me at the time taht the lenses would prevent the condition getting worse as well as improving my sight, after another set of lenses to try and improve comfort i gave up wearing them as i was no longer in education and was working in a very dry and sometimes smoky atmosphere. i am now 23 and recently feel my vision has bcome a little worse but not drastically so, i don't wear any lens or glasses anymore as i get by very well without.

i recently found this site and wandered whether or not if i had continued wearing lenses the KC would have advanced or not? also i'm considering requesting some new lenses, are there any more comfy lenses out there as i notice talk of scleral and rgb lenses.

any help would be greatly appreciated, thankyou

Hi Nathan, Welcome to the KC Discussion Page. I was involved in a 2-year study at Moorfields Eye Hospital about 27 years ago. The study was to find out whether the progression of KC is delayed by the regular wear of rigid corneal contact lenses. The study showed that this was not the case and that the progression of KC continues despite the contact lenses. Moorfields has the most experience of KC in the UK.

So, by not wearing the contact lenses, this will have probably not made any difference to the progression of your KC. These days you can now get rigid gas permeable corneal lenses and also gas permeable scleral lenses. The scleral lenses cover you whole eye (look pretty scary when you first see them) and are much much more comfortable than the corneals. There is a possibility that you can also do 'piggy-backing' - i.e., wearing a soft contact lens underneath an rgp corneal lens - this does not help with the vision but definitely helps with the comfort.

I had worn corneals for approx 25 years before my eyes decided they just didn't want to anymore! I have now worn sclerals for the last 5 years and wish that I had had them a long long time ago - I do not even know that they are in my eyes, they cannot fall out and they cannot get dust/grit behind them. I do have to wear specs with them just to bring my visual acuity up to scratch but that's fine. Alot of people find the scerals correct their vision without the aid of specs.

I have tried piggy-backing in the past and this is also more comfortable than the rgp corneals on their own. So this might be worth a try first.

The most important thing is to try and find a practitioner who is very experienced in KC, who knows about all the options and does not just send you off to have a corneal transplant because you cannot wear rgp corneals. Hopefully, there will be someone at your nearest eye hospital to whom you can be referred.

Good luck and let us know how you get on. SUE