The Corneal Dystrophy Foundation
May 24, 2010
I discovered the wonderful folks at the Corneal Dystrophy Foundation in 2002 at the fuchsfriends website, long before they became the foundation.
I had spent the previous years in desperation as my sight continued to deteriorate from Fuchs Corneal Dystrophy with apparently no good options for a cure.
I had been going to Johns Hopkins every six months for several years and each time, was told that my condition was not bad enough to do a full cornea transplant. I felt as though I was being dismissed with a pat on the back without ever being heard about how my poor vision was affecting my life.
Through the fuchsfriends group and site, I learned that my condition was often under or misdiagnosed. I also learned that the women who tried to ask questions of their doctors were often put off and sometimes not even told the name of their condition.
Through fuchfriends, I was able to consult with a doctor in Portland, Oregon (I live in Virginia) and was lucky enough to have him accept me as a patient for a brand new procedure at that time called DLEK (now DSEAK and other acronyms).
It was through my education at the fuchsfriends message board and website that I was able to walk away from Johns Hopkins and take the plunge with Dr. Mark Terry in Portland.
The surgery went perfectly and I went from legally blind to 20/50 in two days.
I don't know where I would be today without all the wonderful folks at CDF who give so willingly of their time, knowledge, experience and compassion.
After my first surgery, I was able to go to the annual fuchsfriends meeting in Atlanta GA. I was able to get myself on the plane and find my way to the hotel and meeting. When I had gone to Portland with my husband, I could not even read the gate numbers so this was a huge accomplishment for me.
I will always be grateful to Dorothy, Signe, Bob and all the others who make this foundation work. They have helped and empowered hundreds of women just like me giving us the information and strength we needed to get our lives back after having Fuchs Dystrophy.
I've personally experienced the results of this organization in...
my own life. See above comments.
Ways to make it better...
If I had to make changes to this organization, I would...
Get them more funding and publicity.
What I've enjoyed the most about my experience with this nonprofit is...
The caring combined with expert knowledge that really helps to give members their lives back after fighting Fuchs Dystrophy.
The kinds of staff and volunteers that I met were...
So informed and connected with professionals and doctors who would help their members. Caring, compassionate, smart and funny all at the same time.
If this organization had 10 million bucks, it could...
Get their message out even more and hopefully give themselves some salaries for all the time and effort they have selflessly volunteered. And perhaps fund surgeries for people who cannot have the surgery due to financial situations.
Ways to make it better...
If I had discovered them sooner!
In my opinion, the biggest challenges facing this organization are...
Is getting the funds to keep everything going.
One thing I'd also say is that...
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
Client Served & I learned how to keep from going blind.