UK Keratoconus Self-Help and Support Association

Here is a quote from the link below...

"The Cornea Society sponsors the World Cornea Congresses that are held approximately every 10 years and highlights the progress that has been made in both clinical and research endeavors of the international corneal community."

http://www.corneasociety.org/meetings-education.cfm

http://www.corneasociety.com/cfs_2005wcc/

Is anyone going to this meeting from the group...it only happens once every ten years!

It is taking place from 13th to 15th of April '05, immediately before the ASCRS annual congress...both being held at Washington DC.

Best Luck

Sajeev

Yeh I heard about this today

A few UK Surgeons are presenting with there results on Corneal Grafting over 10 year periods, and success rates etc.....some very promising stats are being declared....

Ten year period is a very short time?...and I have just been reading that Blood-Type checks on the donor cornea to the person who is having a transplant does matter to reduce rejection then previously thought...the congess is more about sharing new thinking lke this and others!... and best practices!....So no one going from the group then?

Indeed Ten years is short...but the study you will see will allow us the patients to grade the success of transplant PER Corneaplasty Unit in the UK...this has not been done on ANY YEAR basis let alone 10.......so its interesting reading

I dont know how many others from UK are submitting but the one I saw and read was measured against success, rejection, and interestingly enough how Tissue match was not needed on grafting...with stats back for this........

In all honesty, I beleive Tissue match is done on the 2nd or 3rd attempt or cases where the patient has been through a number of rejection bouts. Whilst one could argue that this can be avoided and the cost of matching is neglibible; there will be a good set of stats to comment on.....I think its also generally deemed unnecessary for a tissue match in the UK, thats what feedback I got from speaking with a few Surgeons...I would suspect this is do to the fact that the material is merely Tissue with no blood vessels thus a reduced % of rejection when compared against other transplants

One thing in the UK that I found really frustrating is tha fact that one can not obtain stats on a surgeon such as how many they have performed, success rate, etc. Theres obviously a number of reasoins for this which is way beyond the scope of this post, but from a KC sufferer perspective this info is vital. .....

The trouble with providing stats for a surgeon is that the good ones will have a longer waitinglist. The problem then is you get a shortage of surgeons as unfortunatly with KC experience is the best way of learning. A surgeon/specialist needs to get experience from somewhere admittedly under guidence and this might not show on stats.

It would be nice if all surgeons showed they were at a set minimum standard which would be for example and very good surgeon, but how would you score this? Where would you even begin?

Indeed I read that tissue matching was not really needed....but I also read that it was done on people with one eye...for that one eye...

What i was reffering to was Blood-Type matching...at first glance it would seem that it does not matter...but i will post a link that shows that it does (please see below)...

I also did read that the experiance of the surgeon goes a long way in the out come of transplants as well...

Its all interesting/important/critical issues...

Thanks for sharing...

Here is the link...

http://www.usc.edu/uscnews/stories/21.html

Def agree with you Gareth...its a hard one to call....but I think due to the seriousness of the procedure and the outcome particularly from our perspective some form of measuring criteria should be in place.

Interestingly enough, when I asked a few people in the profession about this, it was claimed that many of the surgeons would shy away from this as it would basically undermine there work,,,,,probably means EGO somewhere........and I guess in any profession where yo u have tables you have a very aggresive and defensive subject matter

Gareth good points..There is measurments of every sort of thing now-a-days (to see how well something is doing...and what improvements can be made...has anyone thought about these Blood-Type checks?)...I think where eyes are invoved there should be even more measuring and checks and balances going on...but this can only happen if there is a will to do it !!...thats all !

Things like parameters covered can be looked at after there is the will to do so is shown!!

My personal view is that tissue typing is not necessary as my gafrts are nearly 20 years old and the problem I now have in my right eye is that the KC is showing in the old cornea the graft is attached to. Corneal maps were not available to me back then so it would not have been possible to predict the problem I now have.

As far as I am concerned, a succesful graft is one that heals so that I can see perfectly well with glasses. So despite having to were RGP's again, as this is to correct a problem with the old cornea, I still consider my grafts a great success.

I remembr a stats exam question from my finals at university which put stats into question themselves. The aim of the question was to show how easy it is to be mislead by stats and they do not give the full picture so be wary of what you read. They are a measuring device, but not definitive.

Many of us have heard of miracle cures for KC for them to amount to nothing, I for one do not want to see things hyped u for people to be let down again.

Gareth

Hi Gareth...The article above is talking about Blood-Type maching not tissue matching (Blood-Type maching is really cheap to do...so there is no excuses there!...for it not to be done!..as it says that it does make a differance!)

A simple survey of people asking if they are happy with there graph after the recovery period is an easy was to find out what true full picture is !!...Instead of the 98% success rate which is often quoted like a advert for it!

...I think this is mis-leding for many (new) kcers...who may go in to a transplant with out knowing the full facts!...I know many personally who feel Mis-led and mis-informed...

Thats on top of wrong information like transplants being a "Cure" and that contact lens regress or stop KC which are told to patients!

Sajeev