My Nonprofit Reviews
Review for The Corneal Dystrophy Foundation, San Jose, CA, USA
I was told I had Fuchs Corneal Dystrophy in late 2003 at a time when the majority of doctors were performing full thickness transplants for this disease. At the same time, there were a number of doctors who were performing a much less invasive partial corneal transplant procedure, but most of the major teaching institutions were slow to adopt the newer procedure. The first few doctors I went to would only talk about a full transplant and they wanted me to wait until I was practically blind before proceeding. As soon as I found the Corneal Dystrophy Foundation and their web-based group, Fuchs Friends, I was tremendously relieved at their reasoned, informative and careful approach. I was able to access a huge number of resources and stories of others' experiences that empowered me to make my own decision about what was best for my eyes and to find a doctor who met my needs. I went to my appointments armed with questions and information and found a doctor who respected my knowledge and gave me the choice of what type of surgery to pursue as well as the timing for the surgery. There are many web-based support groups and informational sites run by volunteers that make me run in the opposite direction. Not in this case. The information found on the members-only pages of the Corneal Dystrophy Foundation's website are of very high caliber, well researched and designed to empower the user to make his/her own decisions. The site is monitored carefully and email discussions are vetted to prevent hysterical postings, misinformation or diatribes. The knowledge I gained was especially empowering as a woman encountering a medical specialty area served primarily by male doctors, many of whom weren't comfortable with patients who might challenge their long-held beliefs. The treatment changes in the past 25 years alone for Fuchs corneal dystrophy have been revolutionary, so up-to-date knowledge was critical for me in a field that was changing rapidly. I went on to receive two successful partial cornea transplants, guided every step of the way by the Corneal Dystrophy Foundation and Fuchs Friends. While I'm a strong woman, able to articulate what I want to most professionals, I still needed the knowledge and information that the Corneal Dystrophy Foundation provided. I couldn't have done it without them.
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