The Corneal Dystrophy Foundation
May 23, 2010
Fuchs’ Endothelial Corneal Dystrophy gradually stole my independence, my confidence and many meaningful parts of my lifestyle. Because I found the Corneal Dystrophy Foundation and their support website, Fuchs’ Friends, my story ends well. Additionally, my experiences ultimately convinced my surgeon to adopt the endothelial keratoplasty into his practice of ophthalmology. Without the Corneal Dystrophy Foundation, these outcomes would be quite different.
Since learning to read before age five, books and, by extension, the entire visual world had been at the center of everything I accomplished. All of that changed when my prescription glasses for myopia and some minor astigmatism stopped working for me.
That led to a diagnosis of Fuchs’ Endothelial Corneal Dystrophy and explained many of my growing number of falls, fender bender accidents and apparent clumsiness.
Though a glaucoma specialist to whom I was referred explained the disease well and left me feeling that this was not major, when the first transplant left me with astigmatism that did not recede, I realized that my world had changed.
I now depended upon others for transportation. I could not read. All images were blurry, colored shapes without detail. Sunny summer days hurt my eyes. Though a Rigid Gas Permeable contact lens provided normal vision in one eye, it was often painful and did nothing to buoy vision in the yet un-operated and declining other eye.
Worse, nobody offered solutions. My busy doctor preached patience, but gave few reasons. My doctor husband, a doctor but not an ophthalmologist, could give limited help. Though he queried his colleagues, Fuchs’ is a specialized area that they had little experience in treating. I was fast becoming isolated and feeling lost.
At the urging of my husband and my local surgeon, I joined the Corneal Dystrophy Foundation’s support website forum, Fuchs’ Friends. As I grew fluent in the medical terminology and learned more about the disease, my relationship with my doctor changed. He began giving me more information and answering more questions.
Then the Foundation announced that it was hosting a symposium featuring a discussion and question/answer session with a few of the most often referenced doctors in the field. My husband and I decided to attend. The current information, the expertise, the academic prestige shared with us and other Fuchs’ Friends at that event impressed us both.
I decided that my second eye would have a less invasive surgery that was not yet widely practiced by Chicago’s ophthalmologists but was the subject of most of the discussions at Fuchs' Friends and at the Corneal Dystrophy Foundation symposium. That symposium convinced me to seek expertise from a doctor on the Corneal Dystrophy list of member-recommended surgeons. My husband helped with the research by searching the professional journals to confirm what the Foundation knew about this doctor, and he, too, was convinced.
Within a few months I traveled to another city where I had an endothelial keratoplasty done by one of the pioneers of the technique. The results were optimal, and I was referred to my local surgeon for followup care.
The local surgeon who had done the traditional transplant was delighted at the opportunity to observe and compare his method with the newer one in a single patient. I continued to progress rapidly, and the surgeon was convinced to learn and adopt the endothelial keratoplasty into his practice at a major Chicago medical center.
The story has a happy ending. Though my eyes are still a work in progress, I have resumed my normal activities. My vision is now correctable to the ideal 20/20 on the Snellen vision test chart. Most important, I have regained my confidence and my independence.
The Corneal Dystrophy Foundation enabled me to take charge of my care, my health and my life once more.
I've personally experienced the results of this organization in...
I had Fuchs' Dystrophy and cornea transplants for it. The recovery is a process. The organization has helped me to cope with small setbacks. I found an expert surgeon through the organization and have 20/20 vision as a result.
Ways to make it better...
If I had to make changes to this organization, I would...
Facilitate greater public outreach familiarizing the public with corneal dystrophies to equal that of their familiarity with glaucoma or cataracts.
What I've enjoyed the most about my experience with this nonprofit is...
the depth and breadth of the medically accurate information available.
The kinds of staff and volunteers that I met were...
dedicated to helping others and knowledgeable.
If this organization had 10 million bucks, it could...
help needy Fuchs' sufferers to get the needed surgery and give scholarships for research and training of more Fuchs' specialists.
Ways to make it better...
I had discovered it sooner.
In my opinion, the biggest challenges facing this organization are...
the need for ever greater outreach and financing to do that.
One thing I'd also say is that...
the Corneal Dystrophy and Fuchs' Friends have probably had a significant role in advancing the adoption of the latest standard of care surgeries by ophthalmologists throughout the U. S. by at least three to five years.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
Client Served & Joined support group web forum, Fuchs' Friends; became donor; became volunteer responding to posts at Fuchs' Friends from newer clients.