The Corneal Dystrophy Foundation
May 22, 2010
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.
I've personally experienced the results of this organization in...
the successful outcome and clear vision I've gained from two partial corneal transplants, and the knowledge from the Corneal Dystrophy Foundation that I take with me to every ophthalmology appointment I will have for the rest of my life.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
Client Served & I accessed their website and materials after my diagnosis to gain knowledge about Fuchs Corneal Dystrophy.