UK Keratoconus Self-Help and Support Association

Hi everyone
Hoping some of you can share some experiences / advice as I’m really struggling at the moment !
I’m nearly 50, was diagnosed in teens and have coped pretty seamlessly really with specs and contact lenses. In last 10 years contacts have been increasingly hard to fit and have had days when they are pretty painful/ constantly fall of eye etc specs now do next to nothing so on days when contacts don’t work I really struggle to operate. Last few months couldn’t get lenses onto my eyes for any amount of time and now having tried different types including hybrid I’m not sure what happens now. Saw cornea specialist who recommended keep trying different contacts but in running out of time and money!! Will lose job next few weeks as been off for months now as can’t see, it all feels pretty hopeless to be honest

It sounds like you have got to the end of the road with RGP lenses and a pretty common story of slowly progressing keratoconus. In fact, your experience is not unlike my own. I didn't get far with hybrids either as they are still in contact with the cornea. It also sounds like your cornea specialist is not keen on graft for you at this stage - that's not a bad approach, generally the advice is to put that option off as long as possible.

If you are being seen by a high street optician you really need to get referred to a hospital with an eye department that fits scleral lenses and ideally a specialist eye hospital. Your optician can make this referral and your GP certainly can.

Madhat26 wrote: Saw cornea specialist who recommended keep trying different contacts but in running out of time and money!!

It does sound like you need to see someone who specialises in fitting keratoconus and has a range of specialist contact lenses to choose from.

It is unusual for keratoconus to progress in one's forties, but it is not unheard of. It may not be just the change in your cornea shape but it could be you have developed an intolerance to RGPs. There are lots of different types of contact lenses but finding the most suitable contact lens can be a challenge, both for patient and the optometrist. I had a similar problem with my right eye where some days the lens would intolerable, I just had to remove it, it was as if I had soap in my eye. For me piggybacking worked. I now have a soft disposable under my RGP and this works for me.

As for cost if you getting them from an NHS hospital, or from a optician who is prescribing them on behalf of the NHS, then the cost is £57 per lens. This charge includes prescription changes within 12 months. If the lenses are only designed to last six months then you would be charged for replacements after six months.

Lia