UK Keratoconus Self-Help and Support Association

At the moment I wear Rigid Gas Permeable lenses which manage my KS fine (except for light intolerance!)

I have read most of the topics on this forum and am worried that at some stage my vision is going to get to the stages that other people have suffered i.e. intolerance to lens, partial blindness and my biggest fear - grafts. How likey is all this?

Firstly this board is far from representative of the general KC population and most people here like my self that are regular posters represent the extremes of what KC can bring.

Less than 10% of the KC population get to the point where they will need a corneal graft and even fewer that will need a graft in the second eye.

Everyone else gets on well enough with glasses or one of the many types of contact lenses out there.

These are facts that have been presented at the confrence the support group held last year and also given at the AGM this year.

Hope this puts your mind at ease.

KC can stop as quick as it starts, mine deteriorated dramatically in 2004 over 3 months, but since then it has now been stable with no prescription change for 2 years.

The only thing KC prevents me doing is motor racing and that is because I have RGP lenses. If I find a soft lens that gives 6/6 vision, I will be back racing again.

thanks Gareth, it does put my mind at ease a little. What is worrying is the way that can KC can change so rapidly and unexpectedly.

From what I hear, in most cases it is a more gradual thing which is why the graft numbers are so low.

Try not to worry about KC as such. There are some hurdles along the way, but as Gareth says, it is usually quite gradual and as the condition progresses, your understanding of KC progresses as well- which in my opinion makes it alot easier.

Arampal and the others are right. Most people with KC never see their condition deteriorate to the point where interventions are necessary.

If you can wear lenses then count your blessings, and know that you are one of the overwhelming majority of people with KC. Some of us deteriorate beyond that place, most do not.

If you do, you will find nothing but support and kindness on this forum, or that at least has always been my experience.

All the best

Andrew

Gareth mentioned the conference. The DVD is now finished, and "just" needs to be duplicated and distributed.

You will need to be on our postal mailing list though if you would like a copy (it's free, but donations are always welcome). If you're not on the list, please contact Anne.