UK Keratoconus Self-Help and Support Association

Hi,

I have just been diagnosed with KC (today), and am obviously a little bewildered by all the information/discussion of contacts/grafts etc.

I am nearly 31, so it seems from brief reading that I am older than many newly diagnosed.

I had excellent eye-sight until early 20's when it started gradually detereorating (mostly without my noticing).

A few years ago I suddenly realised how bad my eyesight was getting and went to the opticians, and was diagnosed with mild short-sightedness but strong stigmatism in both eyes (tho worse in one eye).

My eyesight has gradually got worse still, tho fairly slowly, and at an eye appointment last year I was told that I may need to wear special hard contacts, though without any explanation as to why (and certainly no mention of KC).

I went for another eyetest today, and the optician diagnosed me with KC (she was 100% certain), and has referred me to the local eye clinic at the hospital (waiting for appointment now).

The optician today explained everything pretty well, and was certainly more helpful and informative than the previous optician(s).

To give you an indication of severity. I am currently barely legal to drive with my glasses ((can see to drive okay - but number plates/signs are difficult to read at distance).

Just wondering what to expect now ....

Any extra help/suggestions/information all gratefully received.

Hello Arron, and welcome to the group.

It may not be the most common to be diagnosed with KC at 31, but there's nothing too unusual about it either.

In the relatively early stages of KC, you'll probably find that wearing a "hard" (RGP = rigid gas permeable) contact lens will give you decent vision. You may well also find that your KC will stop progressing all by itself; very few of us end up needing a graft.

I suggest that you read as many messages on the forum as you have time for, and some of the articles on the main site too. Once you know more about KC, you'll have less to worry about.

All the best,

Hi Aaron,

I think many of us have had KC for years, but eventually get to the point where our brain can no longer compensate. For me, it was 18 years ago after I had two black eye playing rugby, my eye sight never came back. It was suggested that not being able to see for a week with he swelling was long enough for my brain to forget to compensate.

As John says, your KC might stabalise, mine had for many years, but after a few weeks off work not using computers and doing purely distant work I got really bad headaches when I went back to work. Found my KC had got worse (which the optician thought 6 months earlier but settled again) and the time off work ws long enough for my eyes to forget how to compensate. Now on the Rose K RGP lenses and I return to work on thursday after 15 weeks off.

Must say, the way my KC has developed is extremely rare.

I am sure you will be fine.

Hello Aaron

Just thought I would add my little bit.

I was diagnosed at 32 after 2 years of uncertainty between several opticians, so I suppose in reality at 30 KC could probably have been identified had I seen the right people.

For the first 2 years (up to May 2002) I managed fine just with glasses, although these were prescribed by the hospital rather than a high street optician.

In the May of 2002 things were going a little hectic at work and home and I began to feel things were not quite as they should be. A visit to the hospital confirmed that I had got to the point where I needed RGP lenses and glasses were no longer going to correct my vision.

I was warned it may take a few months to get the lenses right as MY eyes were particularly pointy and also very sensitive. In the end RGP lenses were ruled out and I was moved on to scleral lenses which have been really good and give me good quality vision.

At times it has been difficult and you will find that you will learn different ways of coping with day to day things.

I should point out that lots of people have RGP lenses and have little if no problems, I was just unlucky and a difficult patient.

Just remember everyone is different with KC there seems to be no set route or pattern for it to follow.

t hospital appointments or at the opticians ask as many questions as you can think of, make a list before you go is probably best. You may find that information is not too readily available on KC however any questions you need an answer to and post here someone will probably have experience of.

Best wishes

Susan