Keratoconus/ Riboflavin cross-linking

[etherealtruth]

When my (now) 14 year old son was diagnosed with keratoconus I posted here looking for insight (and a commiseration); I received that and offer my thanks to all the responded ( a year or two ago).

I decided to post today to share that my son underwent the riboflavin cross-linking surgery/ treatment in Canada this week. His right eye was treated (it is significantly worse than his left, though he is bilaterally effected). The course of his disease was very rapid in his right eye and his ophthalmologist was very concerned that a cornea transplant was in the near future for him if the process wasn't halted.

On Tuesday he was treated. I am hoping that the procedure will be available in the U.S. in the near future. I wonder if any one has any experience with this treatment .... or I would be happy to share "our" experience with anyone that has any interest. I know it is not a very common disease; I am sure anyone effected gets info wherever they can (as we do).

[Jane Austin]

1. I will be interested to hear what you find out, e.t.

Thanks for posting this.

[etherealtruth]

2. They tell us it will be about three months before "they" can tell

... if it worked or not. The outcomes in Europe and Canada (only approved in Canada since 2009)have been super hopeful .... pretty much 100% have the disease halted. "Some" actually show improvement.

I am so hopeful. Even if it doesn't work it was worth trying. The entire procedure took about an hour.

[Jane Austin]

3. Fingers crossed -

for a good outcome.