Keratoconus: Dina - Israel

Three things you need to do after being diagnosed with Keratoconus

By Dina in Israel 

A month before my son's 14th birthday, he was diagnosed with Keratoconus after a routine check-up in school. When the eye doctor tried to explain what this meant, nothing registered in my mind except the fact that the doctor himself seemed rattled. I received a prescription for glasses for my son, with one lens just plain glass since that eye was no longer correctable. I still didn't understand what was going on. The following day I dragged my son to our optometrist, whom I'd known for a long time and trusted, and he was the one who explained in a language I could understand, what exactly we were up against. He explained to me that within a six month period, his eyes, but mostly the right one, has deteriorated in its vision to the point that he is considered legally blind in that eye. The left was already beginning. Then he told me what my plan of action should be.

This is what he told me:

1. Get a corneal map done from a corneal expert, and

2. Go to an eye doctor who specializes in special contacts for people who have Keratoconus.

Between fulfilling these assignments, I went straight to the computer and researched Keratoconus. The more I read the sicker I felt. For three straight days I read everything I could find about this disease, how it can progress, what can be done to prevent further deterioration (wear a hat, wear sunglasses, don't rub the eyes), what kinds of contacts are recommended, and then I came across two very important sites on the internet. One described a new technique, still considered experimental, though with very good results, called Cross Linking. They apply the cornea with a solution and use a special light to bond the collagen fibers together in the cornea, strengthening it, and the results were all good. I did some more research on the technique, and researched the doctors who do it.

The second important site I came across was kcglobal.org which was started by those who also suffers from Keratoconus. This site brings together both experts and sufferers. It was there I asked many questions about other people's experience with this technique, background information on the doctor's who does it, and simply allowed a month of my frustration, pain and anxiety over my son's condition to pour out of me to strangers who knew exactly what we were going through.

Within thirty days of the diagnosis we had contacted a doctor who did the Cross Linking, made an appointment, and flew from Israel, where we live, to have the treatment done overseas. Before we left we'd consulted with our corneal expert, who said he'd heard of the technique and had heard good things about it (why he hadn't mentioned this as a possibility for us was a puzzle to me!). He was anxious to hear about the results and insisted on an exam a few months after our return.

That was almost two years ago (this being Spring 2007). We've been back several times to both our corneal expert and to our optometrist, who are both amazed at the "lack of progress" in the disease. The Cross Linking doesn't cure Keratoconus, but it does stop the progression. That was the best gift we could have given our son. Since our trip, Cross Linking has been brought to Israel by our own corneal expert, and it has also been brought to many other countries.

How simple that plan of action was for us to follow! The only thing missing from his list was to research the subject on the internet.

So if you are newly diagnosed, here are the three things you need to do:

1. Go to kcglobal.org for support, research on the disease, articles, help from experts

2. Go to a corneal expert

3. Go to an eye doctor who specializes in contacts for people who have Keratoconus

And know that you are not alone.

All content is subject to change from first appearing and is intended as an informational series and should not be used as a substitute for medical advice.