35 years of KC, and what next…

[j vossough]

I was diagnosed with KC in 1973 while I was student. I had my first lenses in Stafford and later moved to West Midland and received treatment in Coventry and Warwick hospital. Up to 5 years ago my job was in software and hence long periods of computer work followed by TV till bed! Then the company I worked for followed the collapse of .com and I decided to go to Israel for voluntary work. Here I am in construction, hence less computers and also I have managed to not have a TV… BBC radio and books do me fine!

In general my KC has not worsened significantly but, due to long periods of using contacts, I am told I have scaring and significant thinning. Last year my right eye became uncomfortable and eventually I was told there is a secondary dimple on the cone that causes the problem. I am now using a piggy-back in the right eye. Not having a TV it means I can take the lenses out when I get home, and to read, I can manage from 15cm – or I squint. However, I have a strong feeling the piggy-back will be short lived and, returning to UK next year, I need to consider the next steps.

Having read the information on this site it looks to me it is unlikely to be recommend for intacs or C3R, which leaves me with cornea graft or Scleral contacts. I e-mailed Sclerals Ltd for information but got no reply.

Does anyone know if this product is still an option, and what is the process, the costs, NHS or not?

[rosemary johnson]

Hi.
You beat me by about a year - I was diagnosed I thin in 1974!
Scleral lenses are certainly available in the UK on the NHS, and they cost the standard NHS contact lens charge each - currently GBP 51.90
It may be that not everywhere offer sclerals, but there certainly are places.
Moorfields in London, JR2 in Oxford are two that do, thanks to the famous Ken "Mr Sclerals" Pullum, and I used to get mine on Merseyside (as it then was).
The process would have to be that you register with a GP once you are back in the UK and have an address, then ask for a referral.
Good luck. When are you expecting to be arriving back?
Rosemary

[Andrew MacLean]

In the UK, if you are assessed as a suitable candidate for scleral lenses, these are provided on the NHS at the cost of around £51.50 per lens. this compares to the commercial price of, as I understand it, over £1000 per lens.

I found sclerals the most comfortable lenses I ever wore.

If you don't manage with sclerals, maybe the best option would be a graft. I have never regretted having my grafts (two; one in each eye, done about two and a half years apart).

All the best and welcome to the forum.

Andrew