UK Keratoconus Self-Help and Support Association

Hi everyone

Im 24, and was diagnosed with KC 3 weeks ago !! Honestly, my doc freaked me out - said i would need a transplant in a coupla years !! And I had gone to him with nothing but "watering eyes" !!

He's prescribed "hard" lenses- which are probably names so because they are "hard" to wear and keep in !! Plus they have a "hard" time in improving my eyesight. In fact thats the odd thing- he says my eyesight is 6/6 - yet the hard lenses !! I am having a "hard" time understanding this !!

In addition he's told me I have "lattice" in my eyes. I've been having "lettuce" since i was a kid for my eyes- and yet its scrabble-cousin has got me

I stay in India and am planning to travel to the UK to get fix on this.

If any of you can suggest a doc in the London area - I'd be grateful if you can drop me a mail at assortedstuff@gmail.com

All the best with KC (thank god for the abbreviation, Microsoft still doesn't recognise the full name )

Cheers
viv

vivkhemka wrote: my doc freaked me out - said i would need a transplant in a coupla years !!

If I were you, I'd get a second opinion. Lots of doctors think that KC = graft, but only 10% of KC patients are grafted. And, in the vast majority of cases (over 90%), the graft is a successl. 90% of us get by quite well with contact lenses. It is true that they sometimes take some getting used to, but there again, if they hurt too much, the fit may not be right and you may want to change lenses or fitters.

Don't worry too much about KC - it won't stop you from living a full and happy life.

Hi Bruce...I was wondering where you got your figures from...is it from a study...?

I got them some years ago from a booklet the NKCF put out. Unfortunately, I lent it out and it never came back.

Hi Bruce....Thanks for letting me know....the reason I asked was is because it is a well known fact that the 90% success rate of transplants don't show the full picture about corneal transplants....and I quote:

"Researchers from Lancaster University and Sheffield University said yesterday they had high hopes for a breakthrough within five years, which could avoid patients having to wait years for a cornea transplant.

For the past 20 years, doctors have performed cornea transplants on patients when their vision cannot be restored in any other way.

But while many operations are successful, there is a 25% chance that the graft will be rejected or fail within five years. This prompted British scientists to look for new ways to restore sight."

This is the link below:

http://society.guardian.co.uk/health/st ... 36,00.html

And on the NKCF web-site it says...and I quote:

"Although only 20-25% of those with keratoconus ultimately require corneal transplant surgery, for those who do, it is a crucial and sometimes frightening decision."

This is the link below:

http://www.nkcf.org/transplant.html

And I don't think there are any published numbers on intolerance to contact lenses.

Warmest Regards

sajeev wrote:But while many operations are successful, there is a 25% chance that the graft will be rejected or fail within five years. This prompted British scientists to look for new ways to restore sight."

Hi Sajeev,
It's surprising how many different figures are bandied about. Here's what kcenter.org has to say:
[/quote]Graft rejection reactions occur in 11% to 18% of the patients (Kirkness et al 1990; Troutman and Lawless 1987). Signs of graft rejection include ciliary flush, anterior chamber flare, keratic precipitates, Khodaoust line and Krachmer's spots. Signs of graft rejection are reported to occur from 1 month to 5 years following surgery (Kirkness et al 1990). The rejection rate for bilateral grafts is higher than if only one eye is grafted. In the bilateral cases, when a rejection reaction occurs it is commonly in both eyes. If the second eye is to be grafted, there is usually a period of at least a year between grafts. If signs of rejection occur, aggressive treatment with steroids is begun. Usually the reaction is overcome and the graft remains clear. Over 90% of the corneal grafts are successful with some studies reporting 97% to 99% success rates at 5 and 10 years (Kirkness et al 1990, Troutman and Lawless 1987, Epstein).
It's hard to know who to believe!

And on the NKCF web-site it says...and I quote:"Although only 20-25% of those with keratoconus ultimately require corneal transplant surgery...

I'm surprised that the NKCF should have changed from 8 years ago! Here another quote from the kcenter.org siteLastly, when good vision can no longer be attained with contact lenses or intolerance to the contact lens develops, corneal transplantation is recommended. This is only necessary in about 10% of patients with KC and carries a success rate of greater than 90%, one of the highest for corneal transplantation. If the Guardian's figure includes all sorts of corneal grafts, maybe that explains the discrepancy.
Does anybody else have any ideas on this?
Best wishes,
Bruce

Thats so true bruce....there is no reliable data on KC....I think there sound be closure on this...or work done to get closure!

Warmest Regards