UK Keratoconus Self-Help and Support Association

Hi everyone

I’m new to the forum; I could do with some help!!

I got diagnosed in my late twenties. I have full blown KC in left eye, I’m unable to read an eye chart at all, and my right eye is in perfect condition. I went through lots of contact fitting with my local hospital and to be honest couldn’t get on with any of them. I had lots of discomfort and pain and gave up. I had rigid corneal lenses fitted first, then one of the large lenses that fit the full eye, a mould of my eye was taken first and the lenses made from it. With both lenses I had a bubble behind the lenses that seemed to move around and cause all sorts of strange visual effects. Anyway I gave up and decided to manage with the good eye. It’s now some 20 years latter I’m 49 and starting to have a few problems, my right eye is not so good now due to age and I am starting to struggle a bit, I do a lot of computer work with my job and am finding myself getting lots of headaches and a sore nose because it is pressed so hard against the monitor . I found this group and decided to join, I have found some really useful information on the forum, and it is nice to know I’m not alone.

The question is what now? I’m really nervous about going down the contact lens route again, I guess I need to talk to the doctor and get his help. I would be interested to hear anyone’s thoughts on the matter as I really don’t know what to do.

Thanks & Regards

Andy

Hi Andy and welcome to the forum,
Things have moved on a lot in the last few years with contact lenses for KC - new materials, new designs - so it would definitely be worth having another go. There are now special soft lenses for KC, there are hybrid lenses (hard centre, soft skirt) there are semi scleral lenses and some people do well with a piggy backing system (wearing a soft lens underneath a rigid one). And more variations on the rigid corneal lenses. If you e-mail me I can send you an article which appeared in a recent newsletter that goes through the various options
anne@keratoconus-group.org.uk
Anne

HI there Andy.....

Well one thing is sure, having KC is no protector against ageing! Your main issues appear to be that your good right eye is suffering the effects of getting older, when near vision focussing becomes more difficult. If your right eye was OK before on its own, its likely it can be again with the correct spectacle prescription. Therefore it is probably best to get that all sorted out before embarking on getting the left sorted. Best thing is to go a long to an opticians and get an eye test (unless, of course, you have already done this?)

Once that is sorted, then do investigate possibilities for the left eye. Not only are there a lot of newer design lenses about now but there are more surgical options as well now, although most of these are only available privately.

Lynn