UK Keratoconus Self-Help and Support Association

Hi, i'm a newbie!



Been diagnosed KC since i was mid twenties,about 6 years ago and it's been a bit of a rollercoaster ride ever since!


One of the things that's made it hard is the lack of support and understanding amongst friends,family,employers etc as most people have never even heard of it, so i was told about this site by my consultant and thought i'd do well to try it out!

Look forward to joining in and giving/recieving support in the future!

Hi Samba,

Welcome to the forum! It's nice to know that you were pointed in this direction by your consultant.

I'm sorry to hear that you've been on a rollercoaster ride - would you like to tell us all about it?

Hi John and thanks for the welcome

As i'm sure you're more than aware, the soft lens option is a good one when they work, but when they don't work it can be a nightmare, i've had all kinds of infections, lens fitting problems, vision anomolies etc and unfortunately a hrad lens has been tried and due to the nature of my corneas(the bulge drags down a lot)has been discounted as unworkable, even when going up from a 9mm lens to a 12.5mm, they just slip down and "rock" on my corneas!

At one point i could get a really good level of vision with the hard lenses when they were new,which deteriorated severly after 3-6 weeks and the lenses were moulded out of shape by my eyes, however despite the vision being good the tolerance of my eyes to these lenses was hit and miss with repeated visits to the GP for genticin drops etc!

Now my eyes are fine with soft lenses comfort wise,infections are extremely rare, other than the odd small sty on a lid and even wearing them for 12+ hours a day in various conditions is a sinch, but the vision has proven extremely hard to get right no matter what prescription i am given, al in all i'm not a happy bunny and often feel a bit of a freak when around new people or in busy environments as my sight is really irregular at different distances/lights etc, it's all very soul destroying but thankfully i'm quite a happy-go-kucky chap and am taking it as it comes with some degree of "fight"!

I've posted asking for more info/stories about peoples experiences and knowledge of scleral lenses, maybe that's the next option for me.

As KC is differnet in all of us, sometimes the quality of vision is a compromise with comfort.

One thing I have found is that the lens that gives best vision gives the most discomfort. This has been overcome through the use of eye drops because we discoverd an issue with tear production.

Getting the right fit when the cornea changes is as much an art as it is a science unfortunatly.

Now you have found this site, download the leaflets and go through them with friends, familly and collegues, I have found this very benefician from helping me understand the condition and it also helps them too.

I have been on this site for nearly 2 years and learnt more in that time about KC than I ever did in the preveous 18 years of life with KC. Now lived and managed the condition quite succesfully for most of the 20 years I have had KC.