UK Keratoconus Self-Help and Support Association

This is an email i got today....i found it pretty interesting that there talking cure and not that it stops progression.

Jeremy, Hi!

Last week was very exciting - NBC's Dr. Bruce Hensel and ABC's Denise Dador aired news segments on a revolutionary, non-invasive treatment for Keratoconus called C3-R.

NBC covered the amazing story of U.S. Olympic Bobsledder Steve Holcomb who won the World Bobsled Championship, the first time the US has done so in the past 50 years, after his Keratoconus was fixed.

Click here to watch Steve Holcomb's story: http://www.youtube.com/watch?v=a1APiP5vnnc

ABC aired the emotional comeback of a New York Fire fighter who lost the ability to fight fires until he had his Keratoconus cured in less than 24 hours.

Click here to watch the story of the Fire Fighter:
http://www.youtube.com/watch?v=OfbkudNS4eo

Warm regards,


Brian S. Boxer Wachler, MD





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Another winter sportsman with KC.

A few years ago the World down hill ski champion had his KC treated with PK graft on each eye. can't remember his name but I think he might have been Swiss. It was definitly posted on this forum somewhere but that was a few years back.

Well, great news for them they've had good results.
I suspect the use of the term "cure" may be media hype. C3R (aka CXL) aims to stop the KC advancing, and in some cases can result in slight improvements to visual acuity, but doesn't claim to give perfect vision itself. And for how long it stops progression remains to be seen as it's only about 11 years old.
Rosemary

It is also fair to say that many of the people who have had CXL may never have progressed much further with their KC even if there had been no intervention.

Andrew

Well rosemary, i think im willing to take a risk of the surgery and getting good vision rather than not risking it then my vision deterioating over the next years. I think the intacs or the PRK after C3r is what makes your vision "better" afterwards.
Jeremy

It is fair to say that the KC 'may' not have progressed much further anyway (but we can never know for sure without the use of a timemachine!) and I think it is also fair to say that it is highly unlikely that the KC would have reversed itself without intervention such as CXL, so it obviously works and may bring some extra benefit even to people who (unbeknown to them) would not have progressed much further...better lens fit/possiblity of PRK etc. Plus I think the outcome of the 'wait and see' approach is potentially far worse than being pro-active and preventing as far as possible what is likely to result from this particular condition.

If it would have halted anyway, then great but you have not lost anything by being proactive. If it was going to stop anyway then the CXL isn't going to do any harm, is it? and if the biggest risks you are taking when having CXL are 1. risk of infection from an invasive treatment; well the same risk applies to contact lenses, PK and any other of the traditional treatments for KC); or 2. that it may have a lifespan of only 10 years; well I am sure that most people would be more than happy to repeat CXL after 10 years if it stabilised their condition and stopped them from having to resort to even more invasive treatments like PK. I know I would. Yes its painful, but no more than waxing my legs!!

I find many on here increasingly negatige about this treatment and I really can't figure out why...

Hi Dubai,
Thank you for your comment. I have the same views as you do. I believe its worth a shot even though i only have KC in one eye. I believe that preventing KC from spreading is better than waiting for it to spread. I Know theres risks from doing the procedure but im willing to take them.
This is a news article from the Bochner eye institute in Toronto.
The procedure has been performed in Europe over the past six years. Clinical studies have demonstrated the safety and effectiveness of this treatment.

Intended benefits:Enhance corneal rigidity
Increase the corneal resistance and biomechanical stability of the cornea
Prevent disease progression
May defer the need for a corneal transplant procedure
May reduce the nearsightedness and astigmatism associated with keratoconus
Enhance contact lens wear
Reduce risk of ectasia with excimer laser treatment

I think for me its worth the risk.
Jeremy

Jeremy

All the best with that. We each of us have to decide for ourselves what risks we want to take, and what risks are too great.

Do ask the clinic before they proceed about the possible downside to the procedure. If you are still confident that any risks are worth taking, every good wish.

Andrew

Thanks Andrew,
Im definately going to find out what the risks are before i jump aboard the bandwagon. I find that i am a risktaker in life, always have been, though i only have 2 eyes and i want to keep them for life. I really hope the c3r is as cracked up as eveyones talking about.

keratocop wrote:Well rosemary, i think im willing to take a risk of the surgery and getting good vision rather than not risking it then my vision deterioating over the next years. I think the intacs or the PRK after C3r is what makes your vision "better" afterwards.
Jeremy

Oh, don't get me wrong! - I'm not knocking the procedure.
Halting KC in its tracks is a positive result. Even pausing it in its tracks for 10 years, 15 years..... whatever.... is a positive result.
Making it easier to fit lenses, or even specs, is also a positive result.
Risks are for everyone to assess - one hopes, on the basis of full and accurate info.
The one thing I was querying was the word "cure" - it's a treatment option that stops the condition where it is, rather than making it better as if you'd never had it.
Rosemary