UK Keratoconus Self-Help and Support Association

I couldn't find the thread it was originally posted in but whilst looking around I found this on the RNIB.

In at least 20 per cent of people with keratoconus, the cornea may become extremely steep, thin and irregular, or the vision can no longer be improved sufficiently with contact lenses. At this stage the cornea may need to be replaced surgically with a corneal transplant. Over 90 per cent of corneal transplants done for keratoconus continue to allow good vision at five years post-transplant.

At least someone out there is giving us some helpful figures.

Marc - John Dart gave us lots of useful figures in the talk he gave on surgery in KC at the 2005 conference. If I haven't already sent you the DVD of that conference, do let me know and I'll put one in the post to you. It's available free to all our mailing list members.
Anne

This is interesting, the article you quote gives the number of kcer's that go on to graft at 20%... others say 10, still others say even less. Does anyone have access to any data that truelly attempts to define this number once and for all?

Over 90 per cent of corneal transplants done for keratoconus continue to allow good vision at five years post-transplant.

If this was true then our job of finding an acceptable treatment for KC would be greatly helped, now we would only have to aid a little under 10% of the KC community.... in affect this is saying of the 20% that do have graft as much as 95% have clear vision after 5 years. With numbers like these there would seem to be little reason to find an alternative.

I would like to see a poll/ study of what PK patients themselves would grade their sight at the five year mark.

Hari

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Hari
I doubt very much that that data exists - partly because I do not believe there is accurate data as to how many people have KC.

With the advent of laser surgery for correction of short/long sight, more and more people are being diagnosed with KC - because before surgery takes place a corneal topography scan will be done - and that will identify cases of KC many of which will be mild/sub clinical - and for whom it is being adequately managed by glasses or soft contact lenses. But they cannot then have the laser surgery they want.

And as someone who has worked quite closely with statistics, I would suggest that they can be made to give you whatever answer you want them too! [Sorry Anne K - you may not agree with me!! ]

Forget what the correct saying attributed to Disraeli /Mark Twain was...but was something like “There are three kinds of lies: lies, damned lies, and statisticsâ€

Hi Pat,
Excelently made point... this is exactly what I believe. And this is why I object to definitive online statements that declare such high percentage success for graft outcomes.

They mislead and should be revised to more accurately express the true 'street level' outcomes...

in fact I think its useless to attach any numeric value to treatments such as this... there should instead be some sort of scale devised by which direct patient input combined with the surgeons percieved surgical outcome are used to appraise a truer value to the technique.

Hari

I would image the number of KC patients needing grafts may be country specific.

One thing I have learnt since being on this forum is that the type of eye care available is very different from country to country. So I imaging in some countries they would opt for a graft before us for example because of the range of lenses and alternative treatments available.

Speaking with the occupational health nurse at work she said a medical definition of a success for a transplant is that the transplanted organ is surviving with no outside help. As we know a graft can survive fine but give us no useable vision so for the patient is that a success?

As has been raised on the forum many times what are the patients expectations?

For me the aim was to have stable vision that could be corrected. Initially that was with glasses, later no correction was needed so my graft exceeded expectations. Later back to glasses and now with lenses so still within expectations.

Due to the graft holding its own, it is still considerd medically to be a success.