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

Rating: 5 stars  

I was diagnosed with Fuchs' Endothelial Corneal Dystrophy many years ago. At the time I was told it was something that may or may not ever affect me. I downplayed the situation and lived my life as usual. During the summer of 2008 my vision seemed to get considerably worse than it had ever been before. In October 2008 I sought out a new Ophthalmologist, who immediately started talking surgery. I told her no, that I was nowhere near the point where I would need surgery. At that time I was convinced that my vision just "wasn't THAT bad". But my conversation with her at that appointment made me think that maybe this Fuchs' thing needed more attention than I had given it to date, and that night I went home and started searching the Internet to find out more about it. I joined a group which wasn't much help, but a member in that group suggested I try The Corneal Dystrophy Foundation. I found it and immediately joined. My life changed drastically from that point on. I read about the experiences of others with my disease; their symptoms, their loss of ability to do things in their daily lives and the courage they had to move on to the "next step" - surgery. I realized I had the same symptoms. I experienced the same restrictions as they did in my lifestyle because I just couldn't see. I started to accept the fact that I had a disease that required action, and that action was surgery. It took reading posts from the group until December 2008, but I finally got up the courage to contact the cornea surgeon recommended by my Ophthalmologist. I spoke with him on the phone and liked him, but even then I was not quite ready. I made an appointment with him for April 2009. I spent the winter reading every post on The Corneal Dystrophy Foundation website and checking out the incredible resources on their site. On the day of my first appointment with my cornea surgeon, I was confident, well informed about my disease and the needed treatments and I spoke intelligently with the surgeon about exactly what it was I needed. He asked "when do you think you will want to do this surgery?". My reply was "what are you doing tomorrow?". Six months earlier, my response would have been "never!". Thanks to the group, I went from denying I needed the surgery (out of fear), to looking forward to having it. I had surgeries between the end of April 2009 through the end of August 2009. My vision today is better than it's been in 30 years! I cannot believe that I put this off for so long and wasted so much of my life with poor vision. Thanks to The Corneal Dystrophy Foundation I will now have clear vision for the rest of my life. Every day I am thankful for the things I can see, and every day I am grateful for the wonderful people who gave me the courage to forge ahead. I have them to thank for informing me of what I was missing and letting me know I didn't have to live like that anymore. They informed me of what to expect before, during and after the surgery. They let me know that there were possible complications and what would be done about those. When there was a minor problem with my last surgery, I knew it WAS minor and didn't panic. I knew what my surgeon would have to do to correct it, and asked when he was going to do the minor procedure that was needed. The group took the fear out of the disease and they took the fear out of the surgery. For that, I will be forever grateful. I still read the posts and I try to help those coming up behind me; those who are following the same path I was once travelling. I hope that I can help to ease the fear others are now facing. This is a wonderful group, and one worth being a member of for life; something I hope to do.

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

This organization educated me about Fuchs' Corneal Dystrophy, which I was diagnosed with more than 10 years ago. They helped me learn everything about the disease and the subsequent surgeries that rid me of the disease.

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

I would make no changes. It's great the way it is. Everyone in the group learns from and shares experiences with everyone else in the group. It's wonderful just the way it is.

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

This group is extremely supportive and helps people to get through a very difficult time. People join the site believing their diagnosis will result in blindness. What they find is help, hope and confidence to move forward. It's wonderful!

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

I've never actually met anyone in person, but have gotten to know them all through emails within the group. They are very knowledgeable and very supportive of all of the members. They make sure information shared is accurate and easy to understand.

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

It could help a LOT of people with eye diseases. Learning that you have a problem with your vision is terrifying, and the group provides a lot of information and support that allows the individual to be well informed.

Ways to make it better...

This group has been incredibly helpful to me, and I don't think my experience could have been any better.

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

Reaching the people who need them.

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

If it weren't for this group, I would still see the world in a blurry haze. I am extremely grateful that I found them, and wish every doctor would recommend the group to their patients who could benefit. I have personally recommended the group to others.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Client Served & I received the support I needed to convince me it was time to do something about my diseased eyes.