UK Keratoconus Self-Help and Support Association

Hi.

My name is Dean and I have KC. I was diagnosed in 1997. My father has always had restricted vision although he never had it formally diagnosed.

To add to this, I had a lazy left eye from birth and this was operated on when I was 10 in 1986. So my left eye does not move much and I get neck ache looking over my left shoulder .

Anyway. In 1997 the consultant signed me over to the optician to have RGP contact lenses prescribed which worked for a couple of years. They became very uncomfortable and I stopped wearing them. I took a long break from wearing them and then 3 years ago I went back to the hospital to give it another go.

So I am on my second round of wearing them although my prescription has changed dramatically. I wear a Scleric lens in my right eye and my left eye is nowhere near as responsive as my right.

I am a lorry driver and rely on my vision but am getting to my wits end. Last year I had a bad bout of conjunctivitis in my right eye. 3 weeks off work with drops and it cleared. Started wearing my lenses again. Since Christmas I've had 4 mild bouts of Conjunctivitis and am spending more time off work than at work .

Back in 1997 they said that corneal grafts were a last resort but I am thinking that its not going to be long before that last resort is the only resort. I don't want to end up with below-legal vision to drive. I don't know whether the doctors are just putting me off because of the expense of the operation.

So, that's me. Hoping that some of you that have been through similar may be able to advise on my next step.

Thanks for reading.

PS I don't know if there are any Opthalmic specialists on here. But if there are then their opinions would be appreciated too.

Hi Dean and welcome to the forum,
It's good that lenses continue to give you driving vision all these years after diagnosis, but a real pain that conjunctivitis is stopping you from wearing them so frequently. I don't think your specialist would be reluctant to do a graft for financial reasons (it's not that cheap keeping us in contact lenses, especially specialist ones like sclerals!) So my guess is that it's more the fact that you do get good vision with lenses. And of course, having a graft is no guarantee that you wouldn't still need lenses afterwards. Most of us still need correction post graft.
But have you had a chance to talk about your concerns with your specialist? Is he/she aware that your livelihood depends on your driving vision? Often hospital appointments concentrate on the medical or practical lens fitting aspects and we don't get a chance to talk about how KC affects our lives.
If you'd like our information booklet about KC and a DVD which includes a talk from a specialist about when to go for surgery, do e-mail me your postal address anne@keratoconus-group.org.uk and I'll send them to you.
All the best
Anne

Thanks for your reply. I have emailed my snail mail address.

My consultant does not seem to give a damn about my livelihood. Just interested in running the conveyor belt and getting me out as quickly as possible.

I just wish the lenses would stop giving me so much grief otherwise I don't think I'd feel like this.

Dean

Which lens cleaning system do you use? maybe you could try another like a peroxide based one to help prevent conjunctivitis, I know its sometimes recommended to replace lenses as the bacteria is stubborn!

There are hybrids which you may find more comfortable, or the new Kerasoft soft lenses for KC, so maybe they'll be worth a try

It's not fun is it when we rely on lenses so much for our livelihood, I hope you get things sorted soon

jay87 wrote:Which lens cleaning system do you use?

Regard K. I used Bosch and Lamb and Saline years ago on the first round.