UK Keratoconus Self-Help and Support Association

I have had Keratoconus for about 8 years now and my condition has slowly deteriorated. My Doctor has recently told me that I am a candidate for Corneal Transplant.

I have found some good information on the web, but much of it seems pretty dated...is there any good place to go to get updated information on the risks, success rate, complications, etc. that I can go to...

Thank you in advance.

Brent Stone

Hi Brent,
You must read the posts of fellow KC-ers who has had a graft on the message board at http://www.kcsupport.org

You can ask all the questions you want and they are really friendly and of course they undrstand.

Thank you for the quick reply.

The website is very helpful...I have been doing some good research today.

You seem like you are very knowledgable from all of your posts.

Do you have any opinion at this point on whether or not someone should try Intacs or Ferrara rings before trying a Corneal Transplant (Graft)?

Have you tried sclerals at all to avoid a graph and then you can "wait and see" about other options?

Its better for you to follow the treads on other options on this on the KCsupport.org web-site.

But personally in short yes as ferrera Rings and intacs are revesable if they do not work.

Look into the alternatives as much as possible before opting for the graft - although I am (so far) more than happy with my graft, I have since discovered that I did not go through all the options available first.

Intacs sound fantastic, although when I asked my surgeon about them I was informed that they are of most benefit in the earlier stages of KC. Apparently by the time you are looking at a graft they are much less effective, and are not a true "middle ground" between lenses and a graft, unfortunately.

Rob

Hi Rob,
Thanks for your input. I think Ferrera Rings is still an option and it has beed designed and developed for KC-ers.

Also there is proof of using it early on can stop KC progressing.

Hi Sajeev,

Sajeev wrote:there is proof of using it early on can stop KC progressing.

I'm not really sure anyone can say that with any scientific certainty. The way KC develops is unlike many conditions, as no-one ever knows how far it will go. We are all different, after all.

If Mr. X has a given procedure, and then a year later his KC hasn't progressed much, who's to say that it would have stopped anyway, all by itself? Now, if 100% of people treated like Mr. X have their KC stop progressing, and no progression has happened in any of them say 10-15 years later, then the scientific evidence would be stronger, and we'd all be being offered the procedure.

As it is, the people working on any procedure will naturally want to "sell" their procedure.

You could well be right, but we must be careful not to let our wishful thinking cloud our scientific judgement.

My own opinion is that KC is "probably" genetic, so the cells in my cornea will grow into weird shapes, simply because they're programmed that way. I don't believe that anything physical will be able to stop them growing like this without damaging them. Not in the longer term, anyway.

Now if we could have a gene therapy eye-drop solution...

Hi John,
Thanks for the input. All I can say is that F/rings is reversable and the proof of its benefits should be checked-out (which is happening in other countries). Even with Intacts (eye glasses can be worn in many cases afterwards)

Now there is also evedence of KC returning in a graphted eye. Of cause a surgeon will be inclined to advocate surgery (which is the same as the argument you put forward.

Brent,

Have you looked into scleral lenses at the Boston Foundation for Sight. I see you are in Boston. I wrote to Dr. Rosenthal just the other day and he responded the same day. It may help you avoid a transplant for now.

R