At the age of 90 my mother was told she had Fuch's by her ophthalmologist and told to go home and use a hair dryer on her eye! As she and I sat there stunned, he walked out of the office. When I checked out, I asked the woman at the desk if she would please write down the name of the eye disease as I had no clue what the doctor had said.
Upon arriving at home, I started to surf the internet for information about Fuch's and thankfully found the Corneal Dystrophy website. After reading all I could, I asked if anyone had a corneal doctor in Dallas they could recommend. I had two responses almost immediately. After emailing back and forth, I asked if I could contact them by phone which I did. They were so helpful and highly recommended the same doctor who had done their transplants. I was so relieved to be talking to people who knew about the disease and could highly recommend their doctor. I called UTSouthwestern and made an appointment for my mom. Before that appointment I read everything I could about preparing for the first appointment, finding all the questions to ask and feeling quite knowledgeable from all I had learned through the wonderful people on this site who had walked this road ahead of us and were so willing to help a fellow traveler. That was 16 years ago and I have continued to follow this site ever since finding it extremely helpful when I had my transplant 4 years ago and now am facing one in the other eye within the next year. Knowledge is power and without the work of the men and women who manage this site and all the regulars who tirelessly contribute and share information, I would have been at a loss as to how to help my mom and ultimately myself face this disease, the surgeries, and recovery with confidence. This Foundation and its members have been a true blessing in regaining and maintaining the precious gift of sight.
I was made aware of The Corneal Dystrophy Foundation in 2017 when my specialist gave me their free literature in advance of DMEK surgery for Fuchs Corneal Dystrophy. I joined the online Fuchs Friends group and the education and support I’ve found there has been invaluable. The site administrators and mentors are devoted to providing detailed, researched, up to date information regarding best practices and surgeons. The ongoing conversations and reportage of group members, their questions, and experiences, plus the responses of mentors, have been extremely helpful. I am very grateful for extraordinary work of The Corneal Dystrophy Foundation!
This non-profit is a terrific source of information for folks who want to be able to understand what can be done about their diagnosis of Fuchs Dystrophy or other corneal dystrophies. The mentors ask questions to elicit the right information so they can help you understand what is going on and what your choices are. Diagnosed in 2008, I thought I'd read enough to understand what was going on, but I kept learning so much more (and continue to do so). It's so good to know I live 10 minutes from a top tier Fuchs surgeon, what questions to ask next time I see her, and what to expect after surgery.
10 stars for The Corneal Dystrophy Foundation and their mentors who answer all questions thoroughly and in a timely manner.
I was diagnosed with Fuchs' Dystrophy in Fall of 2016 and immediately joined the online Fuchs friends. Everyday, I read every question, response, post, comments, science updates, ordered the free literature which helped me to clarify symptoms for myself and loved ones, and have list of questions to ask when meeting with the Doctors. I learned invaluable and practical information about the disease and who the top Drs. in the world are. I also learned new linguistics that come with this disease and about cataract removal, the correct lens to choose....... And early on, of the experimental procedure now called "Descemet's Stripping Only", "DSO", trial by Dr. Kathryn Colby. I was evaluated by Dr. Kathryn Colby at Univ of Chicago Medicine and by Dr. Albert Jun at Johns Hopkins where I was determined a candidate by both for this procedure. I continued to read everyday every post gathering as much information as I could and when I was evaluated by Dr. Mark Gorovoy in Oct 2017 and was told I was on the line of still being a candidate or not, I received DSO on Feb 28 and July 20, 2018 along with cataract removal and toric lens placed and my vision is completely restored. Left eye 20/25 Right eye 20/30 and it will continue to improve this year. Left eye was also an amblyopic eye and now has better vision than it has ever had. I was told I would not be able to read without glasses and I can now :) The cataract removal corrected the astigmatism. I have reported all of this in Fuchs Friends. I am so grateful for the compassionate, efficient, informative, supportive responses as it helped so much with the learning curve and the unknown.
I joined this group this year (2018) and am so glad that I did! It is such a dynamic place for education, advice and encouragement from not only the moderators, but from other members as well. Knowledge is power for sure and the knowledge I gained from this site has put me as ease with my eye condition, knowing that it can be fixed. There is such a peace in being able to get solid information from fellow members as well as professional references to the latest in corneal dystrophy and treatment options.
Fuch’s Corneal Dystrophy! When I was first diagnosed with this disease four years ago, I was told that “it was nothing that I had done and there was nothing that could be done”! Research on the internet led me to The Corneal Dystrophy Foundation and Fuch’s Friends. Thank God! Something can be done! And, there are well-trained ophthalmologists specializing in corneal dystrophy. I have learned so much from experiences of Fuch’s Friends and the knowledgeable and reassuring Mentors. Thank you for being there for me and others with corneal disease.
Mary Schenzer, Connecticut
Diagnosed with Fuch’s Corneal Dystrophy in 2014
I was diagnosed at a local Walmart with Corneal edema and told I would need a cornea transplant, which was a terrifying thing to hear at the time. I found the Corneal Dystrophy Foundation by googling this condition soon after and learned that my situation was not as bad as I had thought. Fuchs friends gave me an invaluable resource for understanding and finding the best care for this inherited disease. After two failed transplants by a local cornea specialist I wised up and sought a second opinion. But for Fuchs Friends I would have never known there were two top tier Fuchs specialists within two hours of my home town at Parker Cornea in Birmingham. I can’t imagine how I would have dealt with this situation without the the shared knowledge available to me as a member of Fuchs Friends.
I was diagnosed with Fuchs on 6/30/17; was just told I had it and nothing about it. Goggled Fuchs and became scared to death. Fortunately Google sent me to the Corneal Dystrophy Foundation and Fuchs Friends. What a wealth of information on something I had never of and wonderful caring people to help me understand what I have and where to find doctors who specialize in Fuchs. I really don’t know what I would have done if I had not found the Corneal Dystrophy Foundation and Fuchs Friends.
My name is Howard Finkelstein. I was diagnosed with Fuchs' Dystrophy in 2014 following my cataract surgery. My cataract surgeon, a skilled surgeon but one who did not make it his business to be transparent with his patients, simply told me I had Fuchs Dystrophy. I knew he couldn't deal with it, so I went on the web. There were the coldly analytic descriptions by the big medical organizations, which left me with very little information about what to expect and how to fix it. A little further down on the search page, though, was the Corneal Dystrophy Foundation, and there I found all I needed to (i) comfort me that I was not alone, (ii) tell me what to expect AND what to be careful about and (iii) most important, explaining the various ways it can be fixed. The initial literature I received from the Foundation was astoundingly accurate, detailed and, again, perhaps most important, human. Together, everything I learned made me feel confident that I could live with this and indeed beat it.
In addition to the Foundation's literature, the "Fuchs' Friends" online group was helpful on so many levels. I have been on another disease-related online groups before and I found it horribly unhelpful. Why? Because it was unfiltered and unfocused. The Fuchs Friends group, thanks to the guidance and leadership of Bob Bellizzi, is the total opposite. It is focused and filtered, informative and supportive.
I am a New Yorker, and when I was diagnosed with Fuchs I was recommended to see two local specialists. I went to see both, but when I compared notes with what I had learned from the Foundation and Fuchs Friends, I understood that these two specialists were not experts in treating Fuchs. I put this question to the Fuchs group - do I have to go out-of-town to get treated, or is there someone in the group who knows of someone more qualified. It was from this inquiry that I learned that Dr. Christopher Sales, who was truly an expert, was moving to New York's Weill Cornell.
Long story short, after a lot of ups and downs, I received successful DMEK surgery in April 2018 and am scheduled for my second DMEK in October. The surgery has changed my life; it's improved my vision to the point that I have never seen this clearly in my entire adult life. The Foundation, and Bob Bellizzi's work, have played a huge part in my successful outcome and I owe them everlasting thanks. They are a model for what laymen can do to guide people to successful medical solutions.
The Corneal Dystrophy Foundation goes above and beyond in helping people make sense of their eye diagnosis and find resources and support. I was diagnosed with what turned out to be an advanced case of Fuchs Dystrophy and was astonished and overwhelmed that my eye condition had not been adequately diagnosed previously. The Corneal Dystrophy Foundation has an online support community with caring mentors and a community who share their stories and I soon learned I was not alone. I obtained medical research studies, access to recommended doctors and learned criteria to consider when selecting a surgeon. After my first surgery to address my condition, I have ongoing questions and have found that others have the same issues and concerns. It has been such a help in my journey to address my eye condition to have this organization. They provide at no charge resources and the online support community. It is invaluable and The Corneal Dystrophy Foundation continues to provide me hope that I can get through my vision issues to a better place with heathy eyes and great eyesight.
In 2004, I was diagnosed with Fuchs Dystrophy by a corneal ophthalmologist. He proceeded to tell me I would go blind eventually if I did not have operations in both eyes. I immediately turned to the internet to search for this disease and found The Corneal Dystrophy Foundation and FuchsFriends. I have learned so much through the years and access to this group has been such a comfort and inspiration. I know of no other group such as this and am forever grateful to the founders, mentors, and members. The wealth of information is unbelievable. Thank you to The Corneal Dystrophy Foundation and FuchsFriends! BelindaO
When my ophthalmologist finally told me (after two years of declining vision and numerous new RX for yet another new pair of glasses) that I had Fuchs Dystrophy, I was shocked and confused. When I asked what would happen with my vision in the future, he simply said that I would go blind. That response sent me straight to the internet where I found CFD, leading me to discover all the good things that can be done for a Fuchs patient. Then I began my search by reading everything that came up on the Fuchs Friends emails and exchanges of information in those emails. I also began searching for doctors in my area who might be knowledgeable and adept in the field of corneal transplants. No luck there; the few I visited were as nonchalant and unconcerned about my Fuchs as my original doctors had been. After reading the experiences of other FF, I knew that when the time came for surgery I would want DMEK and I would want it with an recommended, well -trained and experienced doctor. My poor vision was beginning to interfere with my daily life and I began thinking seriously about traveling to Portland, Oregon, for a consultation with Dr. Mark Terry (a nearly three-hour flight away). But about the same time, I read on Fuchs Friends that a doctor from Salt Lake City was just finishing his Fellowship with Dr. Terry and would be returning to SLC in July 2017. With that information, my decision was made to at least meet this doctor since he was only a one-hour flight away. So in April 2018 I did fly to Salt Lake City for a consultation with Dr. David DeMill at Mountain States Eye Center. I found him to be caring and willing to answer all my questions concerning DMEK surgery, his training with Dr. Terry, and how many DMEK surgeries he performs weekly or monthly. I left his office feeling confident that he was the surgeon that I could trust to do the best for my future vision. Bottom line, I had my DMEK surgery with Dr. DeMill in June 2018 and it was positive experience with a good outcome. I would never have known the questions to ask, how to find the best doctors who work with Fuchs patients, or had my fears allayed, had it not been for the Corneal Dystrophy Foundation. Thank you!
It has been over two years since I was diagnosed with Fuchs Corneal Dystrophy. The doctor who diagnosed me told me very little and told me to come back in six months. He said I would need a corneal transplant and that was it. When I got home, I immediately looked on the computer for information. There was very little but I found The Corneal Dystrophy Foundation and Fuchs Friends.
The mentors led me in the right direction to find the information I needed. I found a fantastic doctor who specialized in this condition. I now am Fuchs Free!
When Dr. Ian Gorovoy, son of Fuchs expert, Mark Gorovoy, told me I had Fuchs Dystrophy and needed to act immediately, he also told me to go home and jump on The Fuchs Friends Website to get more information. What a gift! Here I found peers and experts with all kinds of Fuchs experience. After asking many questions, I was directed to surgeon Dr. Mark Terry in Portland, a renowned corneal transplant pioneer. Fast forward through two painless triple DMEKs - that means they did my cataracts at the same time. Now, instead of slow, painful blindness, I have clear, bright vision, and only need glasses for close reading. Fuchs Friends supported me before, during and after! I am so grateful!!!!
I luckily found Corneal Dystrophy Foundation shortly after being diagnosed Fuchs Dystrophy. I was worried and bewildered. The welcome here was warm, my questions were answered patiently, even when I dithered for far too long deciding on treatment. I am forever grateful for their recommendation of my surgeon who is one of the best in the country. I feel this organization is extremely well moderated and all information is cutting edge. No nastiness is allowed here, unlike other internet sites, and people can feel free to post questions without fear of being embarrassed or attacked or bullied. I like it so much, I’ve hung around years after my transplants and am now a Mentor.
I have only been a member for a short time but I’ve already receive so much information that is so helpful to me. I’ve read testimonials from people in my own area of the country and I now know which doctors are the best in this field. Not knowing where to turn for information this organization has proven to be a real blessing.
What a great support group lead by knowledgeable and caring people!
The Corneal Dystrophy Foundation has a wealth of information. When I was diagnosed with Fuchs Dystrophy, I was devastated. I needed to find a specialist who has knowlageable and has performed many surgeries. Without them I would not have even known about the incredible specialist I now see.
I found this site 1998 when Dr told me I had FUCHS this site
I have read ever since they are wonderful people U got the special mentioned on site it was GREAT when I had my operation July 5 2018
Such accurate, reliable and encouraging information. An absolute education about this disease by knowledgeable, time giving mentors. What dedication!
Without them I would not have even known about the incredible specialist I now see, at their recommendation. In all likelihood I would have had an incorrect surgery with another dr. with who knows what possible catastrophic results. Corneal transplants are serious business!
I heard about this foundation when I was first diagnosed with Fuch's Corneal Dystrophy in 2011. I was impressed with the free information provided by mail which was quite comprehensive. Also and more importantly, the active members and mentors of the online discussion group responded with detailed answers to my questions along with reassurance and kindness to help me face this disease. The recommended doctors list helped me find a good opthalmologist near where I live.