We’re here for you.

Keratoconus Group is a safe, supportive community for people living with keratoconus and the people who care for them.

Join our community

Bill's Keratoconus Story: From Diagnosis to Crosslinking

Corneal Collagen Crosslinking with Riboflavin (CXL)

My son went for his annual eye exam and it was discovered that he had moderate keratoconus in his right eye and mild kc in his left. We were both pretty shocked as everything seemed fine during the exam until the doctor and assistant started whispering to each other and going over the results again and again. The doctor finally explained that what they initially thought was a malfunction of the machine testing Bill's eyes was actually keratoconus.


We were booked in to see a cornea specialist a few months later. She explained in greater detail what keratoconus was and what the implications were for Bill's eye sight. What she told us was pretty frightening. I can remember trying not to cry as I listened to her say that my boy could wind up legally blind and having to have a corneal transplant.

She explained that there was a procedure available called crosslinking that could possibly stop the progression of the disease. The only drawback was that it was  not FDA approved. Which meant that insurance would not cover the procedure. At the time the crosslinking was still in clinical trials and we were hopeful that we could get it done in Maine within a month or two. Bill's kc was pretty stable at that point so we went home and waited for the doctor to have an opening in her schedule. 

About a 2 months later Billy let me know he was having a spot of blurriness in his right eye. I called the doctor and we got an appointment for that day. She did another topography and found that in just two months his kc had progressed by 2 diopters.

She was very concerned. She also let us know that the clinical trials had ended and the machine was no longer available to us in Maine. At this point she was telling us that we could no longer afford to wait and that it was imperative we get the CXL done to save what vision we could in the right eye. She suggested Dr. Donnenfeld in NY. I ended up calling when I got home from the appointment and they were able to fit us in a few weeks later at their Connecticut facility. 

Billy had the epi-off  crosslinking done on his right eye in October. The procedure itself was fairly painless. He did say it was kind of weird when the doctor scraped the epithelial layer. He remained pain free for about 2 hours after the procedure.

Then the pain hit and for the next 8-10 hours it was pretty intense. He found the pain meds to be pretty useless. What seemed to help the most was keeping the room dark and holding his hand over his eye and trying to sleep. He has had some improvement in his vision which is a bonus to us. We are hopeful, but know that there could be changes in the following months. 

We are so incredibly grateful that this procedure is available and that we were able to get it for our son. We are hoping to have the left eye done in a few months. His specialist is keeping a close tab on that eye to watch for any signs of progression.

By Jen Gerlach.

Share to spread awareness!