The road to discovery of my KC was interesting, but probably not much different from many other KC'ers. In 1987, at the age of 16, I had already been wearing glasses for several months, and had finally convinced my parents to allow me to get contacts. These first contacts were Rigid Gas Permeable (RGP), and an utter disaster. After about a month of not being able to get more than two hours of wear, and the frustration of my mother that I wasn't wearing the contacts, I returned to the ophthalmologist. Upon further examination, the ophthalmologist suspected a bigger problem and sent me to a corneal specialist, who diagnosed me with bilateral (both eyes) Keratoconus.
For about the first two years I wore soft contacts specially cut to my Doctor's specifications for KC. When new, these contacts were quite comfortable, but within a month they became agonizing after eight hours. It seems that my eyes produced a fair amount of protein, and I could never get the protein fully off no matter how often or how long I used enzyme tablets. As my KC progressed, the scarring in the cornea increased, and my vision decreased. Around the two year mark, I could no longer get acceptable vision with soft lenses. The next step was RGP's which were, once again, cut to my Doctor's specifications. I actually found RGP's more comfortable over time, but I also found that they had a greater tendency to move off the center of the cornea or dislodge, especially while playing sports or doing any other activity that could lead to mild dehydration.
As my disease progressed, so did my difficulties in functioning through life. In college, I often had friends who thought I was ignoring them because I would not return their waves when in fact I just didn't see them. Active sports like basketball were a disaster because nobody wanted to wait for me to find the contact that had popped out for the fifth time in an hour. Of course, everyone wanted to know why I just didn't wear glasses, which would start the long explanation of KC and how I couldn't even see the E at the top of an eye chart using glasses. Or how, even with corrected vision, I still had double vision and flares and glares. This usually got the "oh" response or the blank stare of not understanding.
From college and into the work force, my vision continued to change. For about the first two years after graduation, I could actually use my Graphic Communications degree the way I wanted. As my vision continued to deteriorate, I came to the realization that the only way I could stay in my chosen profession was to take positions that I considered more on the side lines.
The frustrating part of all this is that I knew my vision was decreasing, but my doctor kept insisting that I could see 20/40 on the eye chart. According to my first doctor, and several that followed, I could see 20/40 even though it took me up to 20 seconds to recognize a letter on the 20/40 and 20/60 lines of an eye chart. To me, taking 20 seconds to recognize a letter isn't 20/40 vision. The argument of 20/40 vision continued with several other doctors over the years with moves to South Carolina and Ohio. The doctors still thought the risks of surgery were too great, and who wants to insist on surgery from a surgeon who's reluctant to operate.
In late 1999, I found my vision decreasing ever further. While driving I often picked up on movement rather than actually seeing a car (especially true with white and silver cars). I found that at 25 mph I couldn't read a street sign until I was passing the sign (too late to turn), and I couldn't distinguish facial features at a distance of fifteen feet. So, I found another corneal specialist in my area, but heard the same old song and dance. Even after explaining to the doctor that I was considering giving up my driver's license because I was not comfortable with driving anymore, he still insisted that I had 20/40 vision and thought the risks of surgery too great.
I found myself feeling very isolated from the world. I only drove when I had to, and if I had to go someplace I had never been before, I would give myself an extra hour. Socially I was becoming isolated further because I just didn't go out.
Finally, I found the National Keratoconus Foundation website, and the link to the Collaborative Longitudinal Evaluation of Keratoconus (CLEK). The CLEK is a long-term study that, among other things, specifically is looking at the quality of life of KC patients. Finally I had at least found an organization that could better relate to what I was going through. Furthermore, I had found that approximately 45 minutes away, University Hospitals of Cleveland was participating in the CLEK study. I knew that enrollment for the study was closed, but I felt hopeful that the doctor involved, Dr. Loretta Szczotka, would better understand what I was going through.
When Dr. Szczotka saw me, she couldn't believe that I could see 20/40 on a standard eye chart with the amount of corneal scarring I had. She was completely understanding about my problems with real world functionality. She explained that as part of the CLEK study, they were doing testing with lower contrast eye charts because the world is not in black and white. What they are finding is that many KC patients have extraordinary difficulty with these low contrast charts. She further explained that she would usually try a different type of contact lens before recommending surgery, but with the degree of corneal scarring I had, she forewent this step and sent me directly to the surgeon. Finally, I felt vindicated. On February 10, I had my first corneal transplant, which was performed by Dr. Johnathan Lass at University Hospitals of Cleveland.