I have keratoconus, but I consider myself a very lucky man.

By Scott Honeyman

My keratoconus was diagnosed 55 years ago. I have had transplants in both eyes, and will probably need another soon.

But I consider myself a very lucky man.

I was 15 when I discovered the reason I couldn't easily read the music I loved to play on my trumpet. Even though I lived in a small town in British Columbia, Canada, the local optometrist had seen keratoconus before - in my uncle - so he knew what my issue was. After a short experiment with glasses, which made a nerdy guy look even nerdier, he prescribed contact lenses.

In the 50s, hard lenses were rigid, and they weren't very gas permeable, but they did the job. Over time, it became more and more difficult to fit a lens on my left eye, and my cornea was scarred and pitted. I was referred to an ophthalmologist in North Vancouver who was fairly new to practising, and knew all the latest techniques for dealing with keratoconus.

Just after I turned 25, he performed a graft on that eye. In those days, it was still considered pretty major surgery: eight-day hospital stay, no lifting, running, climbing stairs or even sex for eight weeks. As I recall, the stitches stayed in for only a few months, and it was less than a year before I could wear a lens on that eye.

That's when I learned the importance of the eye-care professional who rarely gets the credit s/he deserves - the optician who finds the solution for such hard-to-fit corneas. I remember wondering where he got the patience and humour needed to deal with the tedious trial and error that all keratoconus patients will find familiar.

In the end we got great results, and I was able to continue my career as a newspaper reporter without interruption. (I even sometimes took pictures for publications, and in those days the camera operator did the focussing.) A few years later, when I had moved from the west coast to Ottawa my right lens started spontaneously ejecting itself, especially when I turned to look over my shoulder while reversing the car.

Luck was with me again, as I found an ophthalmologist who was also a teaching professional at the University of Ottawa. He did my right eye in 1983. It was a much shorter hospital stay this time, with fewer proscriptions, and it was more than a year before I could be fitted with a lens. Again, the outcome was terrific.

Here's why I consider myself lucky:

  • Both grafts have lasted for longer than many, and I still have good vision wearing piggyback lenses. My left cornea has deteriorated and there's a cataract developing, but we've decided to leave both as long as I have fairly good vision from that eye. My right cornea is still in reasonable shape, although it might need an injection of epithelial cells.
  • I have had a succession of eye-care professionals who made it possible to enjoy a long and successful career and a happy life that includes lots of international travel, with little concern about my eyes.
  • I was born in an age when advances were being made very rapidly in the treatment of eye conditions. I often think how tough it must have been before there were contact lenses and surgery that could treat our symptoms.
But mostly I am thankful I was born with a fairly sunny disposition, much more likely to see a half-empty glass as nearly full. I believe attitude is one of the most important attributes for successfully living with keratoconus. I think about it every day, and I feel thankful every day to my donors and those who have treated me.

But I don't make it a major part of my life. Putting in lenses, like brushing my teeth, is just something I do in the morning before getting on with life. Frequent visits to the ophthalmologist are sometimes inconvenient, but hurt a lot less than some visits to the dentist.

We have a condition that doesn't have to limit how we live or what we do. There's a bright and fascinating world out there, and if we can view it in the right light it's still ours to discover.


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3 comments:

  1. Loved your story! It's inspirational to see someone who's had this disease for so long and still remains a happy healthy individual.

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  2. Loved this story.... so uplifting. Yes you are correct. Some of us are lucky to have access to these treatments and for that I am thankful. Thanks for sharing your story with us

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  3. u must be having kids .....is it necessary that this problem will betransfered to next generation or is this a myth?.....in my family nobody had this problem.so what abt ur family?

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