UK Keratoconus Self-Help and Support Association

Hi All,

I was diagnosed with KC when I was about 13 and wore eyeglasses initially. I tried RGP contacts when I was about 18 but lasted only a couple of weeks with them due to the massive discomfort I experienced wearing them. I have the condition only in my left eye, and the vision in that eye has been absolutely awful (to the point that if I cover my right eye I wouldn't be able to recognise the fuzzy object in front of me was male or female, black or white, what they were wearing) since I was about 18.

Roll on 20 years (I'm 38 now) and it's got marginally worse over the years (the "noise" from the left eye is working it's way further towards the centre of my vision), but up until the last 6 months or so I've never had any discomfort from it, except for it aching occasionally when I am very tired. What I've noticed recently is that it is aching more and more, and also has started to sometimes be irritating when I blink.

Naughtily (and in retrospect stupidly), I've not done anything to get it treated or even looked at for a long time (I've not been to the opticians for about 16 or 17 years), primarily due to my right eye's vision being very good (and has not deteriorated in that time - my glasses from 18 years ago are still accurate for my right eye when I very occasionally use them).

Based on the recent change I finally decided to do some research and then contacted my insurance company (Pruhealth through my IBM company healthcare scheme) who have informed me of the following:

- They will cover a consultation with a specialist provided I am referred by either my GP or an optician (I have an optician's appointment tomorrow morning);
- Cross-linking would likely be covered;
- Ring would NOT be covered;
- Corneal transplant would NOT be covered.

The lady stated that the reasoning for not covering the 2 above are that they would cover the underlying condition (and cross-linking would be deemed to be slowing down the effects of the condition), but would not cover anything related to long/short sight correction, and they deemed that a transplant would not fall within this remit, and my worry is that I'm totally convinced that due to the poor level of vision in the eye that a transplant would be the only viable option.

What are the views and experiences of the knowledgeable folks here? Is this typical? Should they be covering it? What are the likely costs if I were to pay for the surgery myself privately?

Thanks in advance,

Mark
====

Hi Mark and welcome to the forum,
But where to start with all your questions? If you've got an optician's appt tomorrow, then yes do ask for a referral to a specialist. A private consultation will obviously be quicker though most of us here have our KC managed in NHS eye hospitals and clinics. I'm astounded at what your insurer will and won't cover which seems to show no understanding of KC at all! It's also ironic that for the past few years many forum users have been battling to get CXL covered, whereas there has never been any problem with having rings or a graft covered on private insurance. And my guess from what you say is that CXL probably wouldn't help your left eye, though only a specialist can tell you what would be most appropriate for you. Though don't dismiss the idea of contact lenses out of hand - there have been huge improvements in the types of lenses now used for KC with a wide variety of shapes and materials. If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you more info including our information booklet on keratoconus.
It's good that you've had all these years of good vision in your right eye, though it does sound like time to do something about the left! There are likely to be a number of options which the specialist will be able to go through with you, whether privately or on the NHS.
Good luck and let us know what happens.
Anne

Just wanted to provide an update after a very nice phone call I received this morning...

Since my original post I saw a consultant (at Windsor Eye Clinic) who referred me to a different consultant at Focus Clinics, Mr Allon Barsam.

I saw Mr Barsam on 24th July and he confirmed that a corneal graft is my only option due to the severity of the KC in my left eye.

After some backwards and forwards with PruHealth I received a call from them this morning to say they had approved the procedure!

..so I'm booked in for a DALK with overnight stay on 4th November

Mark
====

Thanks for the update and all the very best for 4th November, Mark.
Anne