UK Keratoconus Self-Help and Support Association

I have had KC since my late teens (I am now 37). I initially tried contact lenses, but then got to the stage that I could not tolerate them. Although I have KC in both eyes, it is only really my left eye which is badly affected with vision. I have reasonable vision out of my right eye just with glasses, so have put off any idea of surgery for the time being..

I have check ups with my consultant every 12 months and, for the last 3 years, there has been no noticeable worsening of the condition.

I have only just found this site, and have been having a search through all of the info. I found the info on Corneal Collagen Crosslinking, which refers to the procedure not being suitable for those over the age of 40 because (I quote) ‘as their corneas should have stiffened naturally with age and so stopped progressing’.

I am interpreting this incorrectly, or does this mean that in the majority of cases of KC do not get any worse after the age of 40. I am just being optimistically naive ?

Hi Dave

I am goint to the London Vision Clinic tomorrow to have cross linking done. From speaking tp the consultant there KC can progress your entire life i think it really varies in different people. My left eye is really bad un aided or with glasses but i get good vision with RGP's, i can get by with glasses for my right. To have the crosslinking done your corneas have to be 400 microns thick and mines just made it, .411 left .419 right. I am willing to try anything to avoid surgery.

Maybe your KC has stabilised naturally, there is also a fairly new soft lens designed for KC called keresoft lenses it may be worth finding out about them to.

Pete

Hi Dave, and welcome to the forum.

It is certainly the case that for most of us, as we get older, the onset of KC becomes a lot less likely. But please bear in mind that we are all individuals.

My KC was getting progressively worse until I had a DALK graft at age 41. Ok, that's "just" over 40, and it may have stabilised; but it seems that I wasn't going to be suitable for C3R (too far gone) and couldn't get any significant acuity from even scleral lenses... so a graft was my lot. I'm one of the bad ones though, and the vast majority will not need a graft ever, especially with the prevalance of newer techniques such as C3R.

Hi and welcome
Mine didn't seem to stop after age 40. If anything, it seemed to go through a reasonably stable period in my 20s, then start deteriorating again.
Or maybe my brain just got tired with trying to cope with so much blurriness all the time.
But we are all different - some people have lousy 20s and then stabilise.
And some people, their KC stabilises and stays there.
Key factor with C3R, as I understand it, is that it can't be done after the KC has progressed too far. Which mine did ages ago.
Rosemary

Hello and welcome to the forum

Sometimes it does, and sometimes it doesn't. Mine didn't.

However, if yours had shown no sign of progression for several years, it may be that you are one of the majority for whom KC has behaved reasonably decently. All the best

Andrew

Well, just for the record, mine didn't start till I was 43-44 or so, and got worse by the year till i finally went for grafts when I was 55 and 56 years old, it showed no sign of stopping and was getting worse till the day they took off the original natural corneas. I think I would have been one of those souls who finally couldn't blink right.

piper

If KC patients cones were thoroughly examined and regularly recorded annually on a keractometer at their consultation a significant scientific response could be provided to this question as data records would be available. How many KCers out there since being diagnosed with KC have had their cones recorded annually on a keractometer?

Do you mean a keratometer?

I am pretty sure that I had my cones measured twice a year on such a machine. I was part of a study being carried out in Glasgow on the effect of long-term lens use. I volunteered for the study that was being carried out by Professor Kirkness.

I was in my 50's before I had my first transplant.

Andrew

Yes we're all individuals.
I'm not!

Mine started when I was 35, I'm only 2 years on and I hope it stops when I am 40. My brother's KC started when he was a teenager and seems to have stabilised now that he is 36.

This probably doesn't help much...

Thanx guys for the feedback.

Do you mean a keratometer?

I am pretty sure that I had my cones measured twice a year on such a machine. I was part of a study being carried out in Glasgow on the effect of long-term lens use. I volunteered for the study that was being carried out by Professor Kirkness.

I was in my 50's before I had my first transplant

Yes thanx for the spelling correction Andrew I always seem to feel the need to put a "c" in there before the "t" when spelling KC. My memorys failing me,old age I'm afraid. Maybe "KCmeter" is the solution

Have you had a KCmeter/topography reading taken at all your consultations? Are your consultations private or NHS?

Any chance of you putting the findings of Prof Kirkness study on here?

Yes we're all individuals.
I'm not!

Mine started when I was 35, I'm only 2 years on and I hope it stops when I am 40. My brother's KC started when he was a teenager and seems to have stabilised now that he is 36.

This probably doesn't help much

Any exchange of info between KCers helps Matthew so thanx for that. We are all learning thanx mainly to this wonderful KC self help learning resource forum.

You dont reveal if you have KCmeter/topography readings taken at your consultations Matthew.
You cannot objectively assess the KC progression unless recorded topography is practiced so try to ensure that you get KCmeter readings taken at your private or NHS optometry/opthalmic consultations and ensure that they are filed chronologically in your file.

Eyesight worsens particularly for other reasons after 40, so an eyesight snellen chart test is not going to objectively assess any change in your KC. A visual assessment is not accurate (its dependent on the consultants vision) and if you see a different consultant every time the notes on your file make any comparison with your previous consultation a waste of time imo.