UK Keratoconus Self-Help and Support Association

Hello Everyone,

I can't believe I have not discovered this group earlier! Its absolute gem of a site.

I had my first graft in my left eye at 23 in 1996 & my right in 1999.

I have alot of trouble with my current lenses and only wear them if deemed necessay!

I have been informed that there are new brands of soft toric lenses available for astigmatism. With differing lengths of use.

Is this true?

I have been round the houses with lenses (Gas pearms, Scleral etc). and dream about soft lenses! I don't have an appointment at moorefields for 6 months so if anyone out there can help me...

Cheers

Jo Jo

Welcome to the forum. After floundering around for ages I found this site (or its prdecessor) some time ago, and I agree it is a gem!

As to lenses suitable for a post graft astigmatism, I'm pretty sure that you are right: there are lots of people here who have experience.


Andrew

Hi Jo Jo

Welcome to the board!

Indeed there are numerous contact lenses (soft) for post graft. The most popular, and also probably the top ones, are the Durawave Kerasoft......speak with your Optician and maybe they can get them in to try?

Hope that helps!

J

Thanks Guys,

Most helpful.

Don't know wether this is a good or bad thing. I want to post most more but it seems like this site has everything covered!!

Jo Jo,

Don't worry - post as much as you like. We're a friendly bunch, and hardly likely to bite your head off!

JoJo...

Soft lenses are tricky because most of them mould to the shape of your cornea so any irregularities or distortions are faithfully reproduced by soft lenses. Therefore the usual soft lenses you see advertised are not suitable for keratoconus.

You therefore have to go for thicker lenses which can in themselves cause problems with oxygen transmission to the eye. However, soft toric lenses can work very well indeed - especially the ones designed for KC use. They do have the advantage of being comfortable although the vision may not be quite as crisp as harder lenses - its always a trade off between comfort, length of wear time and best vision.

And also remember - if yu can't get on with soft torics... you may tolerate a RGP lens better worn piggyback over the top of a soft lens!

Lynn

JoJo

Actually some of us use the site as a place where we can state the obvious. We are sometimes sounding off because we have had a grobby day, or sharing good news with the others, or just describing part of our experience in the hope that somebody else has been through the same.

For my part I have always found the folk here to be generally supportive and (when I do something really daft like not going to the casualty department when I think there may be something wrong) they even tell me I'm wrong, but then they go on being supportive.

I like it here. Sometimes we just need to be cheered up, sometimes we need somebody to draw alongside us, sometimes we want to share some really good news.

Alongside this, the forum is a place to learn about and compare notes about a new procedure or experimental treatment. You will have realized that some members of the forum have had different sorts of surgery. some are interested in C3R, some in DALK, some in MiniARK, some in 'open sky' or penetrative grafts.

If I were interested in research into procedures and outcomes, then I'd make it my business to read the posts here. If I were an Optometrist trying to fit a difficult KC eye, I'd read over the experience that people have with RoseK or RGP corneals, or sclerals or soft perms ... etc.

Whatever, this seems to be a vibrant and mutually supportive community.

Andrew