UK Keratoconus Self-Help and Support Association

Having followed Gareth's re-occuring KC, I was looking around through various Eye Journals to have found this Link; detailing a small, yet effective, study performed last year.

Having sent this to himl Gareth thought I should share this with the wider audience so here you go........Ill do the same in future when coming across other relevant papers and links....its just sometimes I think that I may be posting alittle too much and thus coming across annoying and irritating!..Im not honest!

http://www.eyeworld.org/article.php?sid=2054

Hi Jay,

Just to say I enjoy reading your contributions, I have found many good ideas from them and everybody elses. I have tried the systane after reading about it on here and I am finding it very successdul. I have also ordered a pair of pinhole glasses to see if they can help when my eyes get tired.

So don't worry about your postings they are really helpful.

Lesley.

Thanks Jay for posting this.

It does start to make you think that the post graft issues I am experienceing are more common than we realises. As the snippet of research says, initially things look like regular astigmatism which is quite normal post graft and as we age so the astigmatism changes slightly as it would with a non-KC patient.

This mean most pationts who have succesful grafts that eventually end up with glasses and regular visits to a high street optician are never aware as to why their astigmatism changes so much. As has been posted before, many high street opticians are unaware of KC and how it is treated.

It would appear that what I have is more extreme example of this post graft change with +8.1D astigmatism in the right eye. 24 months ago it was +2.0 and eighteen months ago it increased to the +8.1D where it has stayed ever since. From the topography the grafted cornea is quite steep and shows the graft margin clearly.

Vision corrected in right eye is 6/24, uncorrected is 6/60 on a good day!

Left eye has stayed at 1.7D for 10 years now, it was less at one point, but from the topography the graft is relativly flat instead of the circular shape it should be, hence needing correction for short sight.

Left eye corrected vision is 6/6, uncorrected is 6/18.

So what do I see the future, more lenses and possibly the C3R treatment.

For KC people in the future, from the research I have read and correspondence with centres caring for KC patients I see KC being treated as follows;

1) Newly diagnosed mild to moderate KC being treated using C3R to slow the condition. Numbers treated to date are relativly small for a new treatment technique which is why I have written slow although where it has been used, the condition has been halted and even regressed in nearly all cases. However the number followed up after treatment over a 4 year period probably does not exceed 100 patients.

2) For thos already diagnosed C3R may still be an option to stabilise the condition for the same reasons as above.

3) Those needing a graft I again see being treated using C3R for the reasons mentioned in the link Jayuk has posted above. This is to ensure a stable cornea to which the graft will be attached. Hopefully this will further reduce the instances where KC is 'observed' to reoccur in the graf, but is due to a weakness in the remaining pations cornea the graft is attached to.


For those who are considering a graft as all other options have been exhausted I would urge to go ahead with the procedure as what is described above occurs 10 - 20 years post graft and as I have found things have progressed a great deal in the 16 years since I had my grafts.

Medicine advances ever onwards and as patients I feel where possible we must try and help with research by volunteering to take part in whatever studies come our way.

Regards

Gareth

No worries G

I think your case is well intriguing as I personally beleive that KC doesnt come back...however have no proof.....I beleive that the original "remaining" host tissue is whats causing the problem (as we debated before)...but it would be extremely valuable if the donor tissue could be tested to indicate whether KC had affected the actuall tissue itself!.....

But anyway!....I agree that C3R is extremely promising.....I think once we get to the 7-8 year mark than the treatment will become more widely available..as from indicatations many consultants are still worried about the effect of the UV light on the corneal surface and also the vitreous.......even though the initial studies have confirmed that the amount/power of UV required is nowhere near the amount given........

But I tell you something....I would have loved to have had KC now than 10 Years ago!..(Well ACTUALLY ID have LOVED never to have had it in the first place!! but you know what I mean )..the options available now for KC treatment and management are light years ahead of what we had even 5 years ago!!!