When I was diagnosed with Fuchs’ Dystrophy in 2005 the ophthalmologist thought I knew I had it because it was the worst case she’d seen. However, I had no idea what she was talking about so went home, looked it up on the Internet and became terrified that I was going to go blind. Then I found The Corneal Dystrophy Foundation and Fuchs’ Friends. That very evening I spent about three hours reading everything I could on their website and my fears receded. I joined Fuchs’ Friends and during the worsening of my condition I was the grateful recipient of their support, learned a lot from others’ explanations, and participated in discussions. This support has been invaluable, I have now had surgery on one eye and I could not have gone through it this calmly without my Fuchs’ Friends. I have constantly sent silent thanks for their existence, but now I’d like to put it into writing.
I had my first corneal transplant without much information and it was scary not knowing what to expect. After my first transplant, I joined The Corneal Dystrophy Fuchs Friends group and received more and better information than I got from my own eye doctor and the information helped me ask better questions and understand better the answers of my corneal surgeon.
I received a diagnosis of Fuchs' Corneal Dystrophy from a new eye doctor 5 years ago and was told to "look it up" on the internet. My initial impression was that I would eventually go blind and might suffer with painful blisters. Needless to say I was quite depressed after reading this information. I found Fuchs' Friends on the internet and have received wonderful factual information about the disease and future options, including evolving corneal transplant techniques which promise a much easier cure than in the past. After I joined Fuchs' Friends the Corneal Dystrophy Foundation started. I believe in their mission of educating the public to make educated decisions about the treatment of this disease. I have attended 2 symposiums supported by the Foundation and have obtained a wealth of information from these events. Anyone being diagnosed today with this disease now has many options to learn about their choices of treatment due to this wonderful Foundation.
My husband has Fuchs Dystrophy and the Corneal Dystrophy Fdtn. along with its affiliate Fuchs Friends has been a wonderful source of information and support for him. The information is authoritative and has enabled him to manage his condition until, and if, he needs a partial corneal transplant. The information helps minimize concerns about the transplant procedure and offers ongoing support in a very positive way. The organization also encourages members to publicize the need for eye donors through talks for local clubs and organizations, e.g., Lions Club, Rotary, church groups, etc., and provides materials for distribution at these events. This is an organization with international scope. The biennial symposia sponsored by the organization bring together those with Fuchs Dystrophy, their families and ophthalmologists who provide information on the latest research as well as management of the condition. DVDs are made available to everyone for a nominal donation. This service is especially helpful for those without the ability or resources to travel to the symposia. The Corneal Dystrophy Foundation is a volunteer organization. The Board of Directors all have Fuchs Dystrophy and donate their time to maintaining the email listserv as well as organizing the symposia. My husband and I rate this an an exceptional organization.
I was diagnosed with Fuchs' over a decade ago. It was not until I found this organization that I was able to get comprehensive information and support. It has enabled me to better understand the condition and treatment options as well as who the leading medical specialists. Their forum continues on a daily basis to provide beneficial, balanced information on the various aspects of this disease and treatment and provides ongoing support to it's members.
While I knew that I had Fuchs Dystrophy in both eyes since I could remember, no eye doctor worried about it. They would say yet you got it, no better, no worse. Well as everyone knows Fuch is temperamental. Last year my eyes really started bothering me. My doctor wouldn't do anything, so I changed doctors. The next one didn't help either. I went back the original dr. that had told me I had Fuch. He did cataract surgery on both eyes. All was well, and then the left eye started bothering me. He said that it was scar tissue and that he would only do something if I was almost blind. This is when I sought out and found the Corneal Dystrophy Foundation. What a Godsend. I found out everything I needed to know. I also made some good friends. I found a corneal specialist on the approved list, went to him and now I am Fuch free after have DSEAK in both eyes. This doctor didn't hesitate. He said he likes to take care of Fuch before it gets too bad.
Fuchs Distrophy is only in 1 or 2 % of the population but much higher percentage within a given family that has the gene defect. The foundation provides complete information on this disease, including Doctors used by other clients is all areas of the USA and many foreign countries.
I was told I had Fuchs Corneal Dystrophy in late 2003 at a time when the majority of doctors were performing full thickness transplants for this disease. At the same time, there were a number of doctors who were performing a much less invasive partial corneal transplant procedure, but most of the major teaching institutions were slow to adopt the newer procedure. The first few doctors I went to would only talk about a full transplant and they wanted me to wait until I was practically blind before proceeding. As soon as I found the Corneal Dystrophy Foundation and their web-based group, Fuchs Friends, I was tremendously relieved at their reasoned, informative and careful approach. I was able to access a huge number of resources and stories of others' experiences that empowered me to make my own decision about what was best for my eyes and to find a doctor who met my needs. I went to my appointments armed with questions and information and found a doctor who respected my knowledge and gave me the choice of what type of surgery to pursue as well as the timing for the surgery. There are many web-based support groups and informational sites run by volunteers that make me run in the opposite direction. Not in this case. The information found on the members-only pages of the Corneal Dystrophy Foundation's website are of very high caliber, well researched and designed to empower the user to make his/her own decisions. The site is monitored carefully and email discussions are vetted to prevent hysterical postings, misinformation or diatribes. The knowledge I gained was especially empowering as a woman encountering a medical specialty area served primarily by male doctors, many of whom weren't comfortable with patients who might challenge their long-held beliefs. The treatment changes in the past 25 years alone for Fuchs corneal dystrophy have been revolutionary, so up-to-date knowledge was critical for me in a field that was changing rapidly. I went on to receive two successful partial cornea transplants, guided every step of the way by the Corneal Dystrophy Foundation and Fuchs Friends. While I'm a strong woman, able to articulate what I want to most professionals, I still needed the knowledge and information that the Corneal Dystrophy Foundation provided. I couldn't have done it without them.
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.