UK Keratoconus Self-Help and Support Association

Hello from a newbie!

I've had KC since 1983, corneal graft in the left eye in 1992.

Over the years I've made several attempts to wear the contact lenses prescribed for me but I've always found them too painful to wear. The ones I was given in 1983 were RGP and were agony to wear, my second attempt in 2006 went better as the lenses had improved (Rose I think?), but there was still too much discomfort. On this second occasion they could only fit a lens for the right eye.

The thing is my sight is barely adequate with lenses but I can get by. I would like to improve my vision but I can never stick with the lenses. i went with the NHS on both occasions so don't know whether I can get better ones privately (have been quoted £400 for going private - seems expensive!)

just wanted to know the extent to which lenses may have improved in the last 5 years with regards comfort? Anyone's experiences or comments would be welcome!

thanks

Cameron

Hello Cameron and welcome,
Yes, there are improvements in the design and materials of contact lenses for KC all the time.
As well as the standard corneal rgps (including RoseK lenses) there are also now special soft lenses for KC such as Kerasoft, hybrid lenses such as Synergeyes (hard centre, soft skirt) semi scleral lenses such as SoClears and the large scleral lenses. Plus some people get good comfort and vision by piggy backing (wearing an ordinary soft lens underneath an rgp lens). In theory, all of these should be available on the NHS though some small hospitals that don't see much KC may not have the full range. And as the NHS cutbacks bite, some of the larger hospitals may be reluctant to fund the more expensive lenses. If you'd like more detailed information about the options available, do e-mail your postal address to anne@keratoconus-group.org.uk so we can send you our information booklet and other literature.
Hopefully you'll be able to find lenses that work better for you.
Anne

i have recently been fitted with a kerasoft3 lens for my left eye n am getting on great wi it. Mind u i have had cxl n intacs since i last tried lenses.
Have tried numerous diffferent brands of lenses in the past.