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margaret6

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1 reviews

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

Rating: 5 stars  

I thought I was knowledgeable about the disease that was causing my failing eyesight and ultimately encouraged my early retirement. Since it is an inherited disease, I had observed my father's experience and assumed his recommended physician's treatment plan was state of the art. This treatment plan consisted of successive exhortations to be patient and "modify my lifestyle,' ie, give up doing the things that gave my life purpose and meaning. Naturally, I became depressed. Through the wise counsel of Fuchs' Friends, I discovered that, partly through the support of the Corneal Dystrophy Foundation, the surgery for Fuchs' Dystrophy had been greatly improved, and I was already a candidate for the new less invasive procedure. No more waiting! Then the knowledgeable members of Fuchs' Friends coached me through the process of finding a capable surgeon, the awkward transition from my old surgeon, and every step of the surgery and recovery, including a few complications, which would have been distressing, without the reassurance of those who'd experienced them. Today I have excellent vision in one eye and am awaiting my second surgery with enthusiasm. I know that I will end driving, reading, and writing again and restored to a useful and contented member of society.

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

the restoration of my sight, return of self-confidence and zest for living, and a resumption of the round of activities that make me a useful member of society.

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

Increase its visibility to those who still suffer needlessly with the impaired vision caused by Fuchs' Dystrophy.

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

the caring and generous sharing exhibited by members.

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

uniformly generous, kind, and well-informed.

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

fund more research aimed at prevention, rather than curing after the fact.

Ways to make it better...

I had found this organization sooner.

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

getting through the masses of information available on the internet about this disease - not all of it correct or up to date - to get its hopeful message out to those who need it.

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

No question is too minor, niggling, or "stupid" to receive an informative caring answer from a member of Fuchs' Friends.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  Client Served & I was an active questioner and am now an active respondent on the Foundation's list serv.