UK Keratoconus Self-Help and Support Association

Hi Everyone,
I wish I had known about this group years ago. I have read many of the articles on the forums and found them most interesting and finally there are people out there similar to me. It is my fault really for not investingating WWW further with regards Kerataconus. I guess I have "buried my head in the sand"
My story, diagnosed at 15 yrs old, both eyes, right deteriated and had graft in (26 yrs old)1991, Left eye copes well with Gas Perms Rigid. I have been very lucky with no problem. Until Jan 06 were my right lens was becoming uncomfortable and last Friday my consultant confirmed, KC has come back in my right eye, in the cornea that was remaining around the graft. I cannot wear my lens for long and this causing me problems as I prefer not to drive and this means l cannot get to work. and now I am back and forth to my lens fitter ( I go to Hull Royal Infirmary).
Has anyone any advice on the work issue, my company so far have been good, but I am being hassled and feel guilty I have so much time off.
Also I would be interested to know if anyone has any health issues that may be related to KC, I suffer from migrane with no apparent cause and I drop things alot .
Sorry if I have waffled on, but its nice to be able to (hopefully) talk.

Thanks for listening
Regard
Veronica (Caistor, Lincolnshire)

Hi Veronica and welcome to the forum.

No longer do I feel a frak for being the only one that has had KC return post graft.

My right eye was grafted in 1989 and my left eye in 1990. KC has returned in my right eye.

You have made me so happy, so I truly hope I can help.

You may have found this fact sheet already, but I will put the link anyway incase it is of interest to others Information For Employers Fact Sheet

This mentions things like Access to work, I also found my local job centre helpful in this respect. I was in full time work, but through the Disabilities Representative who said it would be possible to organise transport for me to work if public transport was a problem. My 35 mile journey by car takes 45 minutes, public transport it is 4 hours oneway!

However through consultation and mutual agreement with the numerous hospital trips I was having we agreed that I should enjoy some gardening leave. This was mainly because I work with chemicals and at that time there was very little desk work for me to do which they thought would keep me sane. So I enjoyed three months leave on full pay, gradually went back to work and since then my career has gone strength to strength.

My lens took time to fit because as you may have found we fall off the lens fitters chart. The problem as explained to me is that the lens has to fit in effect three eyes! The grafted surface, the graft/old cornea interface and the KC that has come back. It can be done as I am living proof, but it took several visits with at least two weeks beteen visits.

The only lens problems I have had were this time last year for six months when the lens would not sit where it should. This was finaly put down to the fact my cornea was a bit dry and my tear production was poor. I now ensure I drink atleast 2 litres water per day, coffee, fizzy drinks, alcohol do not count as part of the watre/fluid intake.

I also need lubricating eye drops for the tear problem and for me I have to use Systane by Alcon. Initially I had to use drops every hour or so which meant removing the lenses. However after three months I could back off the eye drops and my lens sits in the right place and I have good lens comfort for an easy 12 hours per day, can do 16 on occassions. One day in the week I will go completely without lenses just give my poor corneas a rest.

I beleive in honesty so be prepared for many trips to the lens fitters, describe what you see and how a lens feels in the minutest detail however silly it may seem. It is all useful information for the optom to get the best lens fitting. There are also many more types of lenses from the 'normal' RGP lenses. These are Rose K, Kerasoft, Scelrals to name but a few, all of which your optom will be aware of.

Hope this helps and please let us know how you get on.

Regards

Gareth

Veronica

I'm sorry you have had a return of KC. Your company ought to be making provision for you to be able to continue work with the limitations presented by your condition.

Anyway, it is good that you have found us. Well done!

All the best

Andrew

Veronica

That is really hard for you, re your graft. I sometimes think when we have gone through grafts and all the huppla leading up to it, knowing what to expect can make it harder in some ways. At the moment you need to get your vision right. If you put the time in now to get things right, it will be easier in the long term. Do what you can, and play it by ear. That mind you has always been the hardest thing for me to do, and the hardest part of coping with KC.

good luck

Prue