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Review for The Corneal Dystrophy Foundation, San Jose, CA, USA

Rating: 5 stars  

When first diagnosed with Fuchs' Corneal Dystrophy, I had absolutely no information. I could only react with fear and anxiety. I began to read the CDF information and gradually settled down because I was able to gain knowledge from the literature as well as insight from people who had the same disease as I. I learned where to find top notch surgeons, how to care for my eyes, exactly what the disease was and what the symptoms were, and finally, the expected end result of a corneal transplant. The information I found here was correct, understandable, and most of all, empathetic. Finally here was a place where I could find out what a transplant entailed, where I could get one and what the recovery was like. My fears were allayed, I gained insight into this rare disease, and I was ready to make a plan for myself. In the literature I found what the usual diagnostic tests were, what the 'numbers' meant, when I should have them. Again, information was in place which brought my fear into a manageable level. With the Yahoo group supported by the CDF, Fuchs' Friends, I was able to communicate with people who had my same problems. Here was a place where I could ask my questions and receive answers from those who had gone before me. Here was a forum which helped me to understand my disease and helped me to shape my decisions as to my care and comfort of day to day living. I found my transplant surgeon on the list of doctors and read message after message of people who had used him. My experience at Fuchs' Friends and through the CDF info sent me 1200 miles to a surgeon who is internationally known for his technique, research, and abilities. Without the written word: website and informational literature, I would have had no idea where I could find good treatment. Today, after two partial cornea transplants, I have perfectly corrected vision. I can drive at night, I can survive the bright glare of the summer sun, I no longer have a corneal dystrophy. I could not have achieved this without the support of CDF.

I've personally experienced the results of this organization in...

--doctor choice --sharing of information of a rare disease --transfer of information with printed literature --anecdotal records of previous patients --patient recommendations for pre and post-transplant surgery

If I had to make changes to this organization, I would...

make it available to even more people. I feel they are doing an outstanding job in educating those of us with Fuchs' Corneal Dystrophy.

What I've enjoyed the most about my experience with this nonprofit is...

gaining knowledge about an heriditary condition which may impact my family; gaining knowledge which affects me personally; Learning how many others are going through the same experiences.

The kinds of staff and volunteers that I met were...

Outstanding, giving of their time and talents selflessly. They are wonderful!

If this organization had 10 million bucks, it could...

do even more good...more people, more places. It could train doctors to do a better job at diagnosing Fuchs' Corneal Dystrophy. ...and it could have a national meeting annually!

Ways to make it better...

I'd found you sooner!

In my opinion, the biggest challenges facing this organization are...

Financial support for general meetings/symposiums for the entire country.

One thing I'd also say is that...


How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Client Served & I read the literature about Fuchs' Corneal Dystrophy and participated in the Yahoo group Fuchs' Friends, sponsored by the Foundation. I gained knowledge and was then able to make.