UK Keratoconus Self-Help and Support Association

Hi All

Firstly this is a great site, I have spent the last hour reading various posts on the forum. It is nice to see that others are about to bounce any questions and concerns of fellow KC's. I am have used forums for cars and bikes for a few years now and didnt think to look for a KC forum. My mum found it the other day whilst trying to look for some information on my eyes.

Well here is my question/story:

I am 26 and have been diagnosed with KC since 17. I have had it in my right eye since then and now it is pretty much useless...I think about 2/60 vision. However my left eye has up till now been only a little bit short sighted. So I have been just sticking to specticles as i think they make me look intelligent!!

I did try the hard lenses the summer before last as I was keen to get them for sport, I am a keen cyclist (both road and mountan) and I really miss the wearing wrap around sunglasses to keeping various objects out of my eyes whilst cycling. Anyway I did not enjoy them one bit, my eyes were bloodshot and although i could now just use the lenses all the time it was not comfortable. I had about 4 different sets of lenses over the summer, so say 4-6 months. I gave up as i found the glasses were just as good and much more comfortable.

I went for an eye test on friday as I want to get some new glasses for cycling (Adidas - Evil Eye Explorer - Rx)
The optician noticed that since my last eye test about 18months ago that the KC part of the eye test, or stigmatism has changed from -0.25 to -0.75. Now to me that seems like a huge change so I am all of a sudden concerned for my left eye, and as its all i really use it pretty important to me. Hence the new glasses to protect when out on the bike.

So my question to you is...What is the range of the CYL and what percetage a change is 0.5 (300%) to have over 18 months?

I am going to get a referal to see a specialist ASAP but till then I would just like to know how serious it is? Is it normal for the 2nd eye to deteriate almost ten years later?

Anyway thanks for reading and thanks for any advice in advance. I am off to get one more ride in whilst it is sunny outside. I am taking part in the London to Brighton Cycle ride is a couple of weeks!

Hi Malc, and welcome to the forum. I suppose that should be congrats to mum for finding it.
I thin it is not unknown for one eye to develop KC first and the other to follow later. Unfortunately! IN my case, it came up quite rapidly in both eyes together, so I'm the opposite end of the spectrum, but I've heard your type of experience from others.
Can't really answer your question about CYL readings, but no doubt someone here will - Lynn, maybe?
When you say you tried hard lenses, were these all the corneal lenses:? - about the size of your iris, and made of a hard "RGP" or "Rigid Gas Permeable" polymer?
- if so..... you ought to know that there are now a variety of different types of lenses for KC available now, and some may suit you better than the ones you've tried so far. Some people do OK for a while in soft lenses, of speciality soft-type lenses, then there are ones with a hard centre and a soft skirt round the edge, designed to aid comfort. Then there are the scleral lenses - these look quite terrifying first time one sees them, as they are the size of a 2p piece (but curved, obviously, not flat!) - the idea is they rest on the less-sensitive outer part of the eye and so are more confortable. What's more, because they go right under the eyelids they don't fall out, blow out, flick out, or anything like that - quite useful for sports people! (I've been in sclerals since shortly after first diagnosis and nver had one fall onut yet, even when I've fallen off horses or had low branches splat across my face.
Then there are even some people who do "piggybacking" - wearing a normal corneal or scleral lens with the vision correction ON TOP of an unpowered soft lens that acts as a cushion for better comfort.
If you didn't get on with the type of lenses yu first tried, you might like to inquire about some of the other types now available.
There's also a fairly new procedure called C3R or CXL - of which there are various descriptions and experiences on this site - which won't make your right eye any better, but may slow down the progess of the condition in your left.
Good luck! - stick around and keep us posted.
Hope your appointment with the specialist comes through soon.
Rosemary

Hi Malc,
I think the progression of KC is different in everyone. my eyes developed separately (about 2 years later), but strangely the eye that developed later was the first that I needed a graft for.
I agree with Rosemary. although most people have ALOT of trouble with lenses at the beginning... with some patience most (not all) find a solution. if you wore lenses- you would be able to go back to regular wraparound sunglasses.
I use piggybacks- and find they suit me well. good comfort- the soft lens helps the hard lens stick to the eye, so i can do all sorts of sports/ actiivites like scuba diving and riding on motorbike.
However- if your vision is acceptable to you with only glasses- this is your decision.
Melissa

Malc

Welcome! I am afraid that the one rule with KC is that there is no rule. Things vary in rate of progress, presentation of cone, aberrations in vision etc. Each of us is unique.

Every good wish.

Andrew