UK Keratoconus Self-Help and Support Association

I think that KCmeter is a good compromise!

I was a NHS patient at the Tenant Institute of Ophthalmology in Glasgow. The Institute is now housed in Gartnavel General Hospital, but when I first started to attend there it was housed in the Eye Infirmary on Sauchiehall Street. I am now in my upper 50's but so far as I can remember my cones were measured on the KCMeter at every visit.

I am not sure that the findings have ever been finally published. This was a long term study and I am no longer part of it. I did see an interim paper published by Stevenson and Kirkness (I think it was in the early 90's), and I have seen references to that paper a couple of times, but I do not know that I have ever seen any final or definitive result.

I was recruited at the time when I declined an offer of a graft. I do not regret any of the time I spent on this study or having declined an opportunity to have a graft earlier than I did.

Andrew

ps I found the abstract I was looking for: http://www.ncbi.nlm.nih.gov/pubmed/1468227

hi
i am 50 and have had KC in both eyes for 30 years , my left eye has started to get worse since i had uveitis 15 months ago, i dont know if it would have happened anyway or was due to the uveitis, would be great to here from anyone else who has had same problem
lindamargaret

I am not sure that the findings have ever been finally published. This was a long term study and I am no longer part of it. I did see an interim paper published by Stevenson and Kirkness (I think it was in the early 90's), and I have seen references to that paper a couple of times, but I do not know that I have ever seen any final or definitive result.

Thanx for the link Andrew and further info I'll check it out. Its sad if all that research and effort has not been published but it has to be peer reviewed and approved if its going to get published.

I was recruited at the time when I declined an offer of a graft. I do not regret any of the time I spent on this study or having declined an opportunity to have a graft earlier than I did.

A graft would be the final straw for me especially as often the wearing of lenses is still needed to rectify the vision.

By the way Matthew have you considered crosslinking as a means of stabilising your KC. unfortunately for me it was not an opportunity that I was able to consider and at 46 years of age its probably too late for me. Fortunately my KC since being diagnosed in 1983 I has not gone beyond the "mild/moderate" diagnosis stage of bilateral KC but yes it has got progressively worse.

Hi.
Is a keratometer one of those machines where you look into the display of coloured concentric rings, and the machine measures how far from circular the reflections of the rings in your eyes are?
If so.....
..... the only time anyone has ever used one of those on me was when I went to somewhere in Pimlico (IIRR) to be a guinea-pig in a research project for someone called Marina (IIRR).
She had enormous difficulty doing it, because the light - that is, the bright pink rings - was so bright I ahd great difficulty looking at it, even when she turned it down as low as it would go.
SO I'm extremely glad (!) no-one wants to me to have one done at every appointment.
In my case, the best measurement of how much my eyes are/aren't changing shape would be the differences in contact lens fitting - or as the case may be, how long I can go on with the same lens.
Rosemary

From recent developments in my KC in my right eye the answer to the Q - does the progression of KC stop after the age 40 is NO .

Stephen is right, of course. Progression of KC is commonly slowed as we get older and may even stop altogether, but my KC was still progressing well into my 50's so that I needed bilateral transplants years after I thought I had dodged that bullet.

Andrew

I am very interested in your answers here.

I have just referred someone of 48 for cross linking as his corneas are not progressing but are unstable, steepening and flattening regularly so its impossible to stabilise a CL fit. The surgeon is fine to do this.

I do feel that there are many "facts" about KC that should be challenged, as current research is calling much of what we thought we knew into question. After all, it was not that long ago that it was thought that RGP lenses "cured" KC by "pushing back the cone". Many articles, to this day, start off by saying KC is a non inflammatory condition, yet Lema et al 2008 have shown that there is evidence that severity of KC is directly related to the presence of inflammatory molecules in the tears.

There is a feeling that CXL should not be "risked" on older eyes as these would be "naturally cross linked" anyway. The answers here show this is not necessarily true either!

As CXL does improve corneal shape and vision as well as stabilise KC, if you are "older" and feel you would benefit, do ask your surgeon for further reasons why you should not be treated.

Lynn

The one thing that has proved to be clear about my KC is that it has continued to develop post my 40th birthday. I am now banging on the door of my 50th (well would be if I could see which door it is lol) and the deterioration seems to be continuing but possibly at a slower pace...but only time will tell on that. For what it's worth do remember that never a truer word was spoken re KC being very specific to each individual & therefore I don't think there are any "absolutes" in terms of answers. This can be frustrating but it can also make us unique little gems for research - as long as there are no "definates" then there will be medical interest and research which hopefully will keep us on the agenda!

This thread is now a few years old and when I posted, I was hoping mine would stop soon. In fact the left eye stabilised as you might expect post-graft in 2007 (I was 37). I am 42 this year and my right eye continues to progress and I am now on the waiting list for the right eye for a DALK.

I think I might off the hook though because late last year, I switched from glasses and soft lenses(which wasn't working any longer) to a piggy back system. This was a last ditch to get better va on the right eye which was progressing steadily. The difference was amazing my va on both eyes (one grafted, the other not) jumped 3 lines down the chart compared with the best I could get with glasses. Despite being spectacularly intolerant of rgps, I had no trouble oncle they were over a soft lens. I can wear the piggy back system all day, no trouble.

So the right eye still progresses but it seems to be well controlled by the contact lenses now.

I imagine most people who post on this thread though, like me, are late bloomers, because we see the thread title and think 'that's me'.

Cheers