UK Keratoconus Self-Help and Support Association

For those who had K cease naturally over time or by c3r or graft .. when how was progression controlled?

Mine was diagnosed at 25 as stable, on left.. i've had c3r(trademark for epi-on) on both.. feel like right eye fluctuates a bit...

Hi sarkac... my right eye sort-of stabilised about 10 years ago (aged 30-ish). All by itself. Which was very obliging of it.

My left eye though, that never did stop progressing which is what eventually led me to conclude that a graft was the best option (amongst other factors as well). This was right up until I reached 40 and there was nothing to suggest it would suddenly start behaving itself. This does run contrary to the "Keratoconus stops progressing in your late thirties" advice we typically receive. Not that -- for a great many people -- it doesn't stop progressing around that age. Just for me, it didn't. I've read up on the subject and while continued progression into your forties isn't the norm, it's not unheard of either. As is often the case with Keratoconus, the reason for this isn't particularly well understood, or so it seems.

My "pet" theory is that because I hadn't left the house for about 20 years without sunglasses on, my UV exposure was considerably reduced. "Natural" UV exposure is from what I can gather required for the stiffening of the cornea to occur and the subsequent halting of Keratoconus progression. Only my guesswork as I say and I've never seen anything to substantiate it. But then again, neither have I seen anything by way of a plausible explanation either...

Any particular reason you are asking ?

Best wishes

Chris

Hi Chris,
Thank you so much for replying , I always like how your replies have so much information in it
The reason why I ask is because I was trying to figure out that K stop progression at age 30 or so , which I am lead to believe after hours of obsessive reading may not be the case.
Now i'm just trying to figure out if anyone has seen progression in their 5th decade , ie 40's , but I assume if K really progresses till the 40's grafts would be close to inevitable.

Just getting to know a disease which is a part of me now .. lol ...

It didn't, well not until I had grafts. But I understand it usually slows down in mid 30's, but like everything else with keratoconus I guess it varies.

Wouldn't it be nice to have access to an (anonymized) statistical dataset on KC? I'm thinking about acuity and curvature as a function of age, plus information on surgery or lenses used. Visualizing such data is the only way we might truly grasp the "typical" progression of KC together with the spread between individual cases.

I imagine that ophthalmologists keep such records for their patients, and occasionally present statistical summaries as part of research publications, but I haven't come across actual open datasets (yet?). Let alone a large federated database across research groups! Perhaps this is an area where a self-help group might contribute by building such a database from input of its members, though doing this in a scientifically sound way is far easier said than done

I hate to throw a spanner in the works but I had no signs of KC AT ALL until I was 39. That was in my left eye which in 4 months went from no sign to mild to too thinn for CXL. And 7 months after I was diagnosed it had no useful vision at all. At this point I was almost 40 and scans showed my right eye was completely normal. Then 4 months later I noticed shadows and halos with my right eye too and diagnosis was confirmed as KC and I had CXL done.

So ....my sample of 1 ... would suggest KC starts at 40 and not that it stabilises

@ Gerard

A very good question -- but a huge can of worms !

I've tried get my hands on as much source material as I can as my profession is dealing with statistics. From what I've read, the data is all over the place for Keratoconus. If you're interested in the subject, The Review of Ophthalmology http://www.revophth.com/ is an excellent source of published research info. What seems to occur time and time again is that, no matter what you're talking about (be it crosslinking, intacs, grafts of whatever flavour, age of onset etc. etc. etc.) there's simply no such thing as typical Keratoconus. You can make some sweeping generalisations, like it is usually clinically apparent first in your teenage years or that the thinner your cornea the more difficult it is to get a consistent refraction and the worse your vision. But when you get down to the individual level, the generic "rules" break down too often for them to be a reliable universal read-across.

For instance, you can get a not-too-bad corneal thickness of, say, 500 microns in a Keratoconic cornea but really lousy vision. Or you can have a 400 micron cornea i.e. pretty thin and the person hasn't noticed anything wrong (nor has their optometrist because they usually don't perform that test) until they consider LASIK or similar and it's picked up then.

It might also be the case that even if some of the working assumptions are more robust than others, because of the rarity of the condition, there's too much noise in the data due to the necessarily small sample sizes.

If any of our optometrist friends has any never-fails (or, maybe, usually-never-fails) observations, things that are always true for Keratoconus, would be fascinated to hear them. Or, indeed, on the original question about continued progression at 40+ or late onset Keratoconus.

Cheers

Chris

Hi Chris,

I would argue that, exactly because KC is so diverse, only a large database of real data can help us inform our decision making. For example, I would love to see the histogram of change in visual acuity for people of roughly my age & corneal thickness, who did and didn't have crosslinking done. The answer to such a question is always going to be a fuzzy probability distribution, but at least knowing what the distribution looks like would be a step forward. (Data interpretation WILL be a can of worms, hence we'll always need professionals, but at least they'd have a bigger database to work with!)

I suppose what frustrates me is that a fair bit of data on my rare condition (PMD) must exist, but it's scattered across computers of different ophthalmologists. Sure enough, I bet that data-driven decision making is an open challenge in all of healthcare and science?

Gerard

Perhaps someone on the committee should set up a survey on something like http://www.surveymonkey.com/ and if the link is put on the forum and we all fill it in then it would be a fairly small sample but at least a good start

....sounds like a job for Chris

hi geardpmd and dalbeath,
that is exactly the info I was looking for . I feel like I being the patient carrying the disease know less than so many other people.
I almost decided not to do surgery as I was diagnosed at 26!!!! its only after I read and read about it did I realize that the 30 thing may or may not be true.

thanks to everyone who replied