UK Keratoconus Self-Help and Support Association

Hi everyone,

My name is Manu and im currently an Optomtery student.
I am doing a project about KC and the main aim of it would be to discuss the common contact lenses being used by clinics in the UK today to manage KC.
As the topic is so vast I am experiencing trouble filtering through articles that are mainly for the US population rather than the UK.
I have been reading up on the various posts you have and I am amazed at the valuable knowledge the members are able to provide. This is a great forum.

As I begin the project, the research I have collected so far is brilliant however there are a few facts that are not available.

For example does anybody know where I would find approximate statistics of the incidence and prevalance of KC in the UK is? As figures that I find are all from the nineties and for the US.

Also if anyone would like to point me in the right direction for common contact lenses used today in the UK to manage KC that would also prove valuable...

Any information would be so appreciated,

regards

Manu

Hi Manu and welcome!
We're delighted to help anyone doing a research project into KC, so ask away!
The incidence figures that are quoted now in all the talks we've had from specialists are 1 in 2000. Maths is not my strong point, but my reckoning is that gives around 30,000 people in the UK with KC. And the figure seems to be going up all the time - when I was first diagnosed 25 years ago, the stats quoted were 1 in 10,000 so that's a fivefold increase.
As for lenses used for KC - the most common lens used in hospital eye clinics is the corneal rgp (with a number of different manufacturers and types within that group). But the range of lenses is also increasing all the time. There are now special soft lenses for KC such as Kerasoft and Acuity Softs, there are hybrid lenses (hard centre, soft skirt) such as Flexedge and Synergeyes, some people piggy-back wearing a soft lens underneath a hard one, there are large diameter corneal lenses or semi sclerals such as S-Lim or SoClear, and there are scleral lenses, covering the whole eye and not touching the cornea. I think that covers the main options but someone may be along shortly to tell us about something else.
If you e-mail anne@keratoconus-group.org.uk with your postal address, I can send you a DVD of our 2007 conference which included a talk on various lenses used (although that's already getting a little out of date). And our next newsletter due out in a few weeks time will include a summary of an excellent talk at the last East Mids group meeting which also covered all the lens options. Do let us know of any other way we can help.
All the best
Anne

Hi manu im an optometry student in Ireland i had good few notes on KC that i would be willing to send to you if you have an email address , private message me . ps what Uni you at ?