UK Keratoconus Self-Help and Support Association

Hello all

I am new to the forum but have been suffering with KC for around 16/17 years. I am 34 now and was diagnosed at 18. My KC is of a mild variety so have not needed any surgery or grafts, however I have always 'used' RGP lenses and on reflection have rarely had much success with them. I find that whatever solution I use, whatever cleaning regime or protein cleaners I use, I can rarely wear them for longer than an hour or two a day. I have tried using eye drops with them but to no avail.

There have been periods where I can wear them for a little longer but I have never been able to wear them outside, in work, or in the car. Changes in sunlight or wind make them unwearable, and I tend to struggle by with glasses in work, which improve my vision slightly but not by much.

Anyway, I am fed up with this situation of never really being able to see properly and am considering changing lenses. Having searched on here kerasoft lenses seem to be very popular. I am currently with a private opticians in Cardiff (R.N Roberts) and I do not think they do Kerasoft lenses, however there is an optician who does not far away from them.

Am just looking for advice on whether it's worth spending the money to change lenses - I know there's no guarantees with KC but am really desperate to improve this situation. Also does anyone know if I can get money off lenses/treatment in Wales by being referred by my GP and using the NHS? Am currently between jobs and money is tight. I was initially referred by the NHS at 18 but have been using private treatment for awhile now. Can I get re-referred by my GP?

Any comments or advice much appreciated!

Thanks

Hello and welcome to the forum!
Yes you can ask your GP to re-refer you to a hospital eye department where lenses would certainly be cheaper (and might even be free - different health boards in Wales seem to have different policies on this). As you say, there's a variety of different lens types for KC, including hybrid lenses (hard centre, soft edge) various types of scleral and mini scleral lenses as well as the Kerasoft lens. Not all hospitals will supply all the different types of lens but it's certainly worth trying to find a lens that would work better for you than your current rgps. Good luck and let us know how you get on.

For mild KC you really shouldn't have to deal with RGPs. I have 'mild to moderate' KC and after trialing RGPs (which I hated) I just went for regular astigmatism lenses. Sure, I may be sacrificing maybe 10% of visual acuity but the comfort is definitely worth it... can wear them up to 10 hours straight without an issue! They do dry my eyes out but using drops helps.

Mine are Bausch & Lomb PureVision 2. I've tried many different types but these are my current favourites. They're slightly bigger than most but very soft.