I was diagnosed with Fuchs Corneal Dystrophy (FCD) in 2008 at the age of 56. I learned that it was a gradually progressive disease which, eventually, would likely lead to significant visual deterioration and need to be addressed with a partial corneal transplant. In the years since, I experienced a number of other visual problems (cataracts, retinal issues) but, eventually, it became apparent that the progression of FCD, along with my advancing cataracts, was profoundly affecting my visual acuity and quality of life.
I’m fortunate enough to live in a metropolitan area known for being a center of medical excellence and was able to find a cornea surgeon with an excellent reputation. He confirmed my need for cataract surgery combined with a Descemet’s Membrane Endothelial Keratoplasty
(DMEK) – essentially a current state-of-the-art partial thickness corneal transplant. One eye at a time would be done, each with a combined procedure.
As the months went by and my date of surgery approached, my anxiety increased – largely due to the fact that no one I knew had FCD, and even my primary care doctor was unaware of it. I came to realize, as common as cataracts are, that’s how uncommon is FCD in the general population. It was an example of a “lonely disease” – uncommon enough that it’s difficult to find fellow patients, those from whom one can receive important information, experience, and emotional support.
Fortunately, searching for such support led me, just a few weeks before my surgery, to the Corneal Dystrophy Foundation and Fuchs Friends. There I found what I was hoping for – others with FCD, some like me approaching surgery for the first time, and a great many who had already “been there and done that,” and who could offer a kind, experienced ear and incredibly valuable information and support. That, in conjunction with the informative literature about FCD available to all Fuchs Friends members, enabled me to approach my surgery with a much greater sense of what to expect, both during and afterward, and thus with much less anxiety.
The benefit of the procedure has been everything I had hoped for, providing greatly improved visual acuity and quality of life, and I’m looking forward to the surgery on my other eye in two weeks’ time. I credit my new friends at Fuchs Friends for having made all the difference!