I have not been a member for a long time but it is a group of very intelligent people and I have learned so much. Most important is making sure you find a good cornea specialist. People are sharing their experiences so it makes you less scared. The organization is wonderful. It is hereditary but I was hoping not to get it. Unfortunately I got it much younger than my Mom. Great support & camaraderie in group.
Three years ago i was diagnosed with Fuchs dystrophy by dr kozarsky. I was so shocked that i didnt ask any questions. However, he gave me the blog site-Fuchs friends- so i could read about the diagnosis and learn from people around the world who had this problem. the blog answered my questions. i would write out questions i had from the blog and what my options were when i went to see dr k. i was fully aware of the risks, the problems and the incredible advancement in the care of this disease, which gave me great peace as i committed to surgery. Even though the thought of surgery on my eye was extremely disconcerting, i knew i had the best surgeon and technique available. i am very thankful for the posts and the information i gathered from it. i ordered their information and dvds from them. i am a former nurse anesthetist and needed to be fully informed to my satisfaction. i have had the right eye DMEK and will have the left done probably after the first of the new year.
When I was first diagnosed with Fuch's Dystrophy in my mid-40s, I had no idea what that was. Thankfully, I found the Corneal Dystrophy Foundation. I quickly ordered its packet of information and started reading weekly posts from others who've gone through this ordeal. Thanks to CDF, I found Dr. Terry, who was out of state, but worth the air travel! I had the latest and most successful-to-date procedure, a DMEK, on both eyes about two years ago - eight years after I was diagnosed. I wouldn't have known what a DMEK was without CDF. My father, who also has this disease, had a different procedure done with a different, local doctor, and he's already had to get another transplant. I will be eternally grateful for the education and resources provided to me by The Corneal Dystrophy Foundation.
The Corneal Dystrophy Foundation members helped me in my darkest days. I am a partial corneal transplant recipient. The surgeon had reassured me that fewer than one percent of transplants fail. Well. My first transplant fell into that bucket. And it was frightening! I was out of town, with my hubby but away from my usual support system, when I realized I was blind in one eye and could remain that way while the surgeon waited one month, for the transplant tissue to "wake up." During that month, I messaged the members seeking reassurance and support; one woman from California kept replying, reassuring me everything would turn out OK in the end. She was my lifeline, and she was correct! After one month, the doctor replaced the transplant tissue. The very next morning, I was excited to discern the four-inch polka dots on my purple robe! Gradually, my vision returned, and I had a successful transplant on the second eye. The following year, this member happened to travel to Chicago and made time to meet me. I felt so blessed and will remain grateful to her and to this valuable nonprofit, The Corneal Dystrophy Foundation.
I was diagnosed with Corneal Dystrophy November 2019. I had never heard of the eye disease and was quite surprised at what my doctor had diagnosed me with.I found Fuchs Friends on the internet and found all the answers to my questions, educated myself about the disease and treatment and found all the support of others who have experienced every stage of progression and treatment. Thank you Bob Belizzi and all the mentors. What a difference this non profit as made in so many lives!
When I first found out I had Fuchs I was so scared. By using this web site and other materials I learned that by using their materials I could gain information about drs and treatments. It has made me feel like I am not alone in making a decision. It has made me want to get informed and make hopefully the best choices for me and my eyes!!
In November of 2019 I went to an appointment with a corneal specialist at the recommendation of my eye doctor because my vision could no longer be adequately corrected with glasses. Expecting to confirm a diagnosis of cataracts, I was shocked to find out I had something I had NEVER heard of before- Fuch's Dystrophy. The doctor recommended I have surgery as soon as possible. I left the appointment with all the paperwork needed to plan for surgery and we set a date a few months in the future.
I started reading up on this corneal disease and fortunately found The Corneal Dystrophy Foundation online and joined Fuch's Friends. What a godsend! I not only found trustworthy
medical information, but learned so much from the other member's first hand accounts! I quickly learned that the doctor I had seen for my diagnosis was not doing the most up to date treatment. I canceled my surgery and found a new provider through the foundation's list of recommended doctors. This is a sight-saving resource for a fairly common, but not well-known disease.
Having Fuchs Dystrophy is a confusing frightening thing. My optometrist seemed to know what I should do when. She didn’t.
I’ve learned from Fuch’s friends what I wish I knew ten years ago. We learn through Fuch’s Friends what to expect as the disease progresses, doctors who are experienced with Fuch’s and what to expect before, during and after surgery.
The leadership is educated and caring. The support community tremendous. The website is packed with information even I can navigate.
I know two other people with this disease and the first thing I tell them is to join Fuch’s Friends.
I am so grateful for this site, the information and Bob and the mentors who are like a warm hand reaching out.
I was diagnosed with Fuchs dystrophy in 2016 at 22 years old and the thought of losing my vision was extremely scary that young. Through an online group run by the corneal dystrophy foundation I found others like me in a similar situation that helped me through accepting the fact that my eyes were generating and I was going to need surgery in the near future. Through the group I found out that I had more options than the ones previously presented to me and was given a list of specialists that could give me a better idea of what would be best for my personal medical history. Without the group I would have never found the surgeon that just recently did surgery on my eye and I am already seeing great results just shortly after the surgery. I still have a few weeks of recovery but I can't imagine what my life would be like if I didn't keep searching for the best option for me and found it through the corneal dystrophy foundation.
I had an appt with a top tier corneal specialist, Dr.Jack Parker, BHM, AL. in December 2019. He was the fourth doctor I had been to see after been diagnosed fifteen years prior with fuchs.. It did not take long for me to KNOW I had found the doctor I wanted to treat my fuchs by doing a DMEK on my left eye. He also was the one to tell me about the nonprofit fuchs friends digest. It was so comforting over the next two months to read everyday various stories of many others with fuchs and their journeys. It’s been almost 9 months since my DMEK, and I continue to look forward to reading it daily. I’ve been able to share my story and possibly have helped others , as theirs stories continue giving advice on further treatments.
I am very thankful being associated to fuchs friends, as I believe a patient needs to be as educated as possible before deciding on a surgeon. Judy Wilson
Diagnosis: Fuch’s Corneal Dystrophy in both eyes. My quality of life was declining at a seemingly steady pace. Couldn’t drive on a bright, sunny day or at night. Several refractions done, bought new, expensive prescription glasses and they didn’t help. Googled Corneal Dystrophy and thankfully found my “Fuch’s Friends”! Wonderful, understanding friends overseen by Bob Belizzi. So many people experiencing the same symptoms. I gained confidence that state of the art treatment was available. This led me to the Physician’s list and an appointment with Dr. Christopher Sales in NY (currently in Iowa). After having the cataract removed and an IOL, then a DMEK in the eye most affected, my vision was so greatly improved, my life was back to normal. I had the cataract removed in the other eye this summer by Dr. Lorenzo Cervantes in Connecticut and will need another DMEK or maybe a newer type procedure in the future! I
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
The Corneal Dystrophy Association is a wonderful organization! Years ago I watched my mother and aunt try to find information about Fuchs’ Dystrophy without much success. When I was diagnosed I was so relieved to be able to connect and share information both in-person and online. Through this group I was able to locate a specialist who informed me I was horribly misdiagnosed! I am forever grateful.
Until I was diagnosed with Fuch's Dystrophy I never knew there was such a superior support resource as The Corneal Dystrophy Foundation. From them I have received the information and exchange that has allowed me to have the confidence to better manage my condition. I will always be grateful that CDF was there.
I can not say enough about this organization and Fuchs Friends. I was diagnosed with Fuchs in my 40s. A few years ago I found this sight and have been so impressed with the organization Bob and all the Fuchs mentors on Fuchs Friends. I have seen quite a few specialists in the Fuchs field, but known of them give the clarity to what is entailed in having Fuchs, prospects of surgery and outcomes. Hearing from others is so valuable and every question I have had has been answered. I have learned so much and appreciate the dedication to all those involved.
Unfortunately, I found this organization after I had finished my second corneal transplant. However, I had a lot of complications, and was able to find help on the site--and ENCOURAGEMENT! That means a lot! I've also since been able to help other "newbies" to the site with their questions. I'm grateful I finally found it, and grateful my brother, who has just been diagnosed with Fuch's found it easily with my help. Thanks, Fuch's Friends--you are friends indeed!
I had endured poor vision for years with my Fuch’s Corneal Dystrophy. I was fairly resigned to becoming increasingly debilitated by my problem. I had been forced to retire because I could no longer discern the difference between the numbers on my computer. This is a big problem for an accountant. Driving was becoming very scary and dangerous. And nighttime driving had been impossible for months.
Through a happy coincidence, I discovered the support group Fuch’s Friends, supported by the Corneal Dystrophy Foundation. I quickly discovered that a world-class eye surgeon, specializing in cornea transplants, was in Birmingham, Alabama, just 45 minutes from my home. I had a consultation in January, and in June I had cornea transplants in both eyes. I had always been terrified of the old-styled, full-thickness cornea transplants because the recovery was so long, and the outcomes were so uncertain. But, after reading the testimonials on the Fuch’s Friends board, I was confident that I had made the right choice of doctors and that I would have a successful outcome of my DMEK surgeries.
If it were not for this group, I would have been too reluctant to proceed with the vision-restoring surgery that has returned my life to me. I am now able to see almost perfectly. I’m awaiting the 6- month mark so I can be fitted with new glasses. My surgeon is extremely pleased with the progress I’ve made and with the measurable difference in my vision now. While I will always need glasses because of my astigmatisms, I can see better without my glasses now than I have been able to see in over 15 years with them. It is only through the excellent work of this group that I have my life back. The mentors and the participants are all extremely knowledgeable and encouraging. Thanks you Corneal Dystrophy Foundation! Here’s looking at you!
When I was first diagnosed with Fuch's corneal Dystrophy in 2004, my eye doctor told me to go research it on line. One of the web sites I found was Fuchs Friends (FF), a discussion group sponsored by the Corneal Dystrophy Foundation. Through FF I learned a lot about my disease and what could be done about it. I have since had partial corneal transplants (DSAEK) in both eyes. FF helped me with support and advice. My left eye was done in September of 2008 and the right eye in March of 2009. Through FF I have been following the surgical advances and the research being done by the top Doctors in the world.
Finding out you have a rare eye disease is scary! Not knowing what to do, how to get treated, and where to get help can make the diagnosis that much worse. When I found The Corneal Dystrophy Foundation I felt empowered. Not only did I find a welcoming and caring community of similarly afflicted people willing to help, I also found resources that could educate, inform, and guide me. Not sure where I’d be without the foundation. I found a doctor who operated on both my eyes successfully and now I have a much improved quality of life. As a photographer, avid reader, a needle-work hobbiest, my eyes are the most important to me and my happiness. I am so grateful for the foundation and all the great work it does.
All the help they give on prospective surgery options and how the community shares how they each work, how to deal with the disease, where Fuch's specific doctors are... very very helpful organization for a disease that most haven't even heard of. Thank you!
This non profit provides valuable information. Doctors can diagnose Fuchs but rarely know a great deal about it. This non profit helps you understand what the disease is and provides resources for treatment and support.
After cataract surgery in 2018, I could not see. I was blurry in the morning and by midafternoon objects came into focus. I was so worried and could not drive or function normally. As a teacher, I could not imagine how I was going to work like this. I saw my surgeon and he never gave me a diagnosis. He had used terms during exams that were never explained to me like gutata. Then, I went to a retina specialist at his recommendation. He was the one who gave me the diagnosis of Fuchs in August 2018. I then went to a cornea specialist who was able to give me an accurate refraction for glasses in November 2018. He told me about Fuchs friends and the Foundation as a resource and I am so glad to have learned of this group.
I have learned so much by reading the others' experiences. This organization is awesome and I have recommended them. I have also attended the Illinois meeting at Advocate Hospital to discuss Fuchs.
THANKS for all your information and support.
I am one of those quiet people who doesn’t like to post, but has gained immense knowledge from this group. I wanted to post my experience for those who are anxious about the DMEK procedure. In my experience both surgeries were fairly simple and painless. The only real discomfort was the third day laying on my back. The first two days I was too tired to get up and about except to eat and visit the restroom. I exercise and walk the dogs daily so I am not one to sit around.
I am lucky to have a husband and daughter here to feed me and take care of the dogs and cat.
I prepared for the “on your back days” by having a “airplane” pillow to keep me from rolling over as I am not a back sleeper. I used a pillow under my knees for my lower back. I also made sure I visited my chiropractor the day before surgery.
Day three I listened to audio books, music, and we even watched a movie on the ceiling.
My first surgery I had a contact lens afterwards as the left eye had significant more damage than my right eye. I had some days of irritation (like something in your eye) but used a prescribed ointment and it was bearable.
My second surgery was pushed up after all the COVID delay because someone cancelled. Bless them!
I am on day 6 after the right eye surgery and the bubble is all but gone. Any irritation I had Tylenol took care of. I have clear “tape on” face shields to shower with and no water gets in my eyes. Works terrific.
Already my vision is better. I only received my new prescription for my left eye one week before the second surgery. But it was wonderful. I could finally drive! That wait was because everything was closed because of COVID.
I was required to test for COVID 3days before surgery. Now that wasn’t fun.
i look forward to clear vision in both eyes. Currently I can’t believe how clear my left eye vision is. All this to say don’t be afraid- I missed so much in the past hiding under sunglasses and a hat, sitting in the backseat because I couldn’t stand the glare, no driving at night-all those things And more which Fuchs causes.
I am happy to say I am Fuchs free!
I joined Fuch's Friends at the Cornea Dystrophy Foundation out of necessarity. I was DX with Fuch's Dystrophy at age 47 and I was in disbelief!
I had NEVER even heard of the word let alone the diagnosis.
I left my MD’s office with many unanswered questions and my head spinning. The medical field and most MD's provide very ill to no support for patients with this disorder.
That is when I went home and over the course of the next few weeks I searched the internet for hope. I found my peace and hope at the Cornea Dystrophy Foundation and especailly their amazing support group called Fuch's Friends!
I have been on the Cornea Dystrophy Foundation list for the past several years. Actually I joined Jan 11, 2016. Cornea Dystrophy Foundation has a wonderful packet of information for newly diagnosed folks, just like me, with Fuchs!
I wrote to the Founder and Director of the Cornea Dystrophy Foundation, Mr. Robert Bellizzi, and within days I received a wonderful packet of new updated information at absolutely no charge. The information from Cornea Dystrophy Foundation was a light in the darkness. Cornea Dystrophy Foundation and especially Fuch’s Friends provided me with hope!
Cornea Dystrophy Foundation has an outstanding support group called Fuch’s Friends. Many of the folks on this list have all gone before us and many will come after us.
I cannot thank Mr. Robert Bellizzi, Cornea Dystrophy Founder and Director, enough by the scarifce of his time, talent, and treasure. He has been a wealth of information over the years to me and everyone else at the Cornea Dystrophy Foundation and especially Fuch’s Friends
Because of Cornea Dystrophy Foundation and especially Fuch’s Friends I have now crossed over. I am four months (left eye) and two months (right eye) post-op from DMEK surgery. I have had cornea transplant, cateract removal, and IOL distant implants, called a DMEK due to the outstanding educational website at Cornea Dystrophy Foundation and Mr. Robert Bellizzi.
Here is my shared story if you are interested.
This all started 10 years ago. At age 45 I went to my neighbor's eye MD and he fitted me with multifocal contacts of which I loved and had used the 30-day disposal ones up until June 2019.
At age 47 the eye MD told me that I had Fuch's Dystrophy. It must have gone in one ear and out the other because I do not ever remember having that conversation with MD. No one in my family, paternal nor maternal, has had this disease by the way. I am so blessed I suppose.
I have my yearly eye exam and then about two years ago MD sent me to a specialist for the Fuchs with Optomic Partners Dr. Brandon Ayres at Wills Eye Institute Philadelphia, PA. He has a satellite office in Marlton, New Jersey.
Dr. Brandon Ayers confirmed that I not only have Fuchs Dystrophy and two cataracts but something is going on with the Macular (macular pucker) in mylefteye. For the macular pucker issue Dr. Ayres sent me to Dr. Jonathan Barofsky Retina Care Center Lakewood, New Jersey. Dr. Barofsky stated that the Macular is holding its own (my words) and to come back in a year ( I had an appointment with both MD's in the past two weeks of July 2020 ).
I saw Dr. Brandon Ayres in Jan 2019 and all was well. I had a very small floater in the left eye but that was it. I could see well with or without my contacts. I could certainly function and drive in the evenings with no issues.
Fast forward to Jan 2020 and my 55th birthday last month (Dec 2019) and a whole lot had changed.
I had stopped wearing contacts a few weeks prior since I have had extremely dry eyes over the years due to the contacts. The only drops that I utilized over the years were and still is Similasan drops for dry eyes and or red eyes. It is over the counter at Wal-Mart, CVS, Rite-Aid etc..
I purchased a pair of cheaters (reading glasses) at Walmart and I was at 200 strength whereas the prior year I was at the 150 strength.
I had made an appt with Dr. Brandon Ayres on Friday, Jan 17, 2020. I could not read nor write without my cheaters. I had cloudy vision in the left eye. My Fuch's Dystrophy was advancing quickly!
I was struggling with night driving too. If it was raining and it was in the evening I was grounded because I could not see the road markings. Its the only way that I was able to drive at night by watching the painted white lines and other road markings. The massive starbursts were the worse.
My only saving grace was the Cornea Dystrophy Foundation, Fuch's Freinds, and Mr. Robert Bellizzi, Director and Founder of Cornea Dystrpohy Foundation.
Thank you again, Mr. Robert Bellizzi, for providing me and thousands of others with hope! You are truly the light in the darnkess!
Thank you kindly, folks, for reading my story. It is most appreciated.
The Corneal Dystrophy Foundation and, particularly, Fuchs Friends has been a real source of information and encouragement. When you suffer with an eye disease that most people have never heard it is so important to have "friends" that you can communicate with who understand what you deal with.
Thank you for all of the support and free literature you have provided as I move closer to the date of my DMEK.
A special thank you to Bob Bellizzi who founded and moderates the Fuchs Friends Forum.
Recently, my brother was diagnosed with Fuchs' (rhymes with "dukes") Dystrophy, a rare eye condition. The Corneal Dystrophy Foundation provided both the technical information and the patient experiences I needed to understand his eye condition and its treatment.
He needed a relatively new kind of surgery, DMEK (Descemet's Membrane Endothelial Keratoplasty). I learned from the Foundation the minimum volume of DMEKs required for a surgeon to develop the needed muscle memory and competence in handling possible complications.
The Foundation gave me information at all levels: introductory booklets; articles by corneal surgeons; expert presentations at an annual conference; and insight from others living with Fuchs'. Knowledgeable moderators run its online patient group, and I cannot praise these volunteers enough. They help members find answers to their specific questions and indicate when only an eye doctor can answer the question.
My brother was told by his first ophthalmologist ("off the mall oh gist"), not a corneal specialist, that his corneas were not yet thick enough to proceed to DMEK. I learned from the online group that medical thinking has changed. Now the criterion for operating is whether the Fuchs' is affecting the person's quality of life. My brother had had to give up reading, his favorite pastime.
With information gained from the Foundation, I was able to advise my brother both to change doctors to a corneal specialist and to consider surgery sooner. The Foundation keeps a list of eye surgeons who perform DMEK and indicates those recommended by ten or more patients. It is not always easy to determine from a doctor's website what kind of training s/he has received in DMEK, as most eye surgeons perform mostly cataract surgery. The Foundation helped my brother find a surgeon with appropriate training and experience in DMEK.
The Corneal Dystrophy Foundation is a great non-profit organization, because it pools information and resources for widely scattered (and hence isolated) individuals, because it provides information suited to all levels of inquiry, and because its volunteers provide both empathy and knowledge. Through it, my brother gained the knowledge that enabled him to proceed with sight-restoring surgery.
I have had 2 partial cornea transplants due to corneal dystrophy and I don't even have the words to express the gratitude I feel to Bob and Monica for the dedicated service they both give to this amazing organization! Without this support I would have felt so alone and I would have been lost. Because of the excellent information and encouragement from them and the other members I felt loved and cared for!
May God Bless you all and keep you in His Loving Care! Kathy K.
When I was diagnosed with Fuch’s Dystrophy in my late 30’s, I was experiencing no symptoms. Thirty years later, as my vision steadily declined, I began an intensive web search to better educate myself about corneal transplants. The Corneal Dystrophy Foundation’s Fuch’s Friends provided EVERYTHING I needed to know, including information about experienced corneal surgeons with great surgery outcomes for partial transplants. This doctor was within a four hour driving distance from my home. Without Fuch’s Friends to define terms, share stories, provide encouragement and follow up, I never would have the perfect surgeon who successfully performed Triple ultrathin DSAEK surgery. I appreciate the professional, no nonsense way that this non- profit operates. It is invaluable to me.
I found out in 2003 that I had corneal dystrophy. There was very little infomation about it, until I found about Dr. Price on Corneal Dystrophy Foundation website. Thankfully I contacted his office and made arrangements to have my problems taken care of by him. I did let everyone know at the corneal dystrophy website about the results (which were absolutely fantastic). I had one eye done in 2004 and the other in 2005 and still have 20-25 vision. Without this website, I might never have heard about Dr. Price and am very grateful for all the information i gained. I look at the website frequently even now and realize how many people in the past 20 years have learned so much and given great help from the ones who manage the site. So I am (along with everyone else) very thankful for this great nonprofit organization.
I have been a member since 2003. When I realized I needed to have DSEK transplants, read everything I could find, and learned so much from this site.. I wrote abut my surgery with Dr. Price when it was fairly new and hoped i could encourage others to utilize his services... He is now one of the EXPERTS in the field.. My surgeries took place in 2004 and 2005 and am happy to report that my eyesight is great and am finally "fuchs free"... I know so many others who have gained so much information from this site and highly recommend it to others with this disease.. There is a cure available!
I am from Australia, I went to see about problems with my eyes in 2013 and was bluntly told I had Fuchs Dystrophy and would eventually go blind. I was panic stricken having just finished art college. I scoured the net and found the foundation and wrote to them. I received an incredibly fast response and assistance and went to see a specialist in Sydney who was very kind and thorough and allayed my fears with great explanations of everything. I also received all the way from America an information booklet which really assisted me so much. I am so grateful for the information and ongoing support .
The Corneal Dystrophy Foundation provided essential information when I was diagnosed with Fuchs Corneal Dystrophy - a frightening diagnosis, to say the least. The educational pamphlets and videos that are made available, along with the extremely supportive email community and local group that is facilitated by a CDF member, helped allay my fears and helped me research and find a surgeon. I'm happy to support this organization.
I received a frightening diagnosis - Fuchs Corneal Dystrophy. Was told I'd need to have multiple surgeries, and would lose my eyesight if I didn't. I turned to the internet to research this condition, and discovered to my immense relief the Corneal Dystrophy Foundation. The many mentors and members were so very helpful, informative, and reassuring. I ordered the free literature, which provided me with questions to ask when I visited surgeons, and ultimately helped me make the decision to seek a second opinion. Without the CDF and Fuchs Friends, I wouldn't have had the vision-saving surgery that I needed - and would likely still be intimated by this diagnosis. I cannot support the CDF enough!
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.
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.
I was diagnosed with Posterior Polymorphous Endothelial Dystrophy, a very rare genetic condition. TCDF helped me find out more information I was unable to find on my own and help me find a doctor that can help treat my condition who is the top of their field.
I owe my vision and my life to The Corneal Dystrophy Foundation, Thanks to them I didn't go blind.
If it weren't for the Corneal Dystrophy Foundation, I would have had a very outdated Corneal Transplant, with the need to wear a hard contact due to astigmatism caused by the outdated Corneal Transplant, a year recovery for each eye, much more chance of rejection, and infection during healing etc. Fortunately, I found the Corneal Dystrophy Foundation and its "Fuchs Friends." I found the surgeon who did my Transplant on the "Fuchs Friends" and had the newest partial transplant on my complicated, challenging case. I now have 20/20 in that eye, and am thrilled beyond my wildest expectations with the results. It took one month to heal.
When I was first diagnosed with Fuch’s Dystrophy 30 years ago I could find very little information about the disease. Once I started having symptoms many years later I discovered the Corneal Dystrophy Foundation. I wasn’t at the point of needing surgery yet but followed the posts, attended a symposium and learned so much about the disease and treatment. Since I am legally blind in one eye and it is uncorrectable, I was extremely concerned about having surgery on my only good eye. Unfortunately, my vision deteriorated rapidly in 2013 to 20/60 in my good eye. By that time, I had seen 4 corneal specialists in my town and I didn’t feel confident in any of them. Fortunately, through the Foundation, I had learned about Dr Francis Price in Indianapolis. I had DMEK’s performed by him that year and now have corrected vision in my good eye of 20/25.
This is an amazingly supportive group with a founder and moderators that give tirelessly of their time to ensure patients diagnosed with corneal dystrophies have a complete understanding of their disease and can make an informed decision about their care.
This site was invaluable for the sage advice, comforting words, and encouragement before and after my triple DMEK surgery. My vision has been restored and I have my life back. The moderators and volunteers I. This organization are exceptional at helping us new to Fuchs navigate through the medical establishment to find to itch surgeons. So thankful for all of you!!!!
Frantically searching on the web for any information I could find on corneal Dystrophies, I came across the Corneal Dystrophy Foundation. The foundation’s Fuch’s support group provided me with informative literature, access to professional DVD’s of past professional symposiums, and the opportunity to learn and share from and with other members of the group. The foundation’s existence has made an incalculable difference in my life by providing information and support significantly reducing my anxieties, allowing me to be an informed patient, and, I think, enhancing the outcome of treatment.
I had a Cataract Operation and did not seem to recover my sight. I went from DR to DR
looking for help and what I got was RX for Plano Lenses and the words not everyone gets their sight back from a Cataract Operation as well as the operation was successful.
I finally was diagnosed with Fuchs Dystrophy.
I am 75 and was facing declining sight and facing an operation I knew very little about.
I got to the internet and youtube and the complexity increased. Then I found Fuchs Friends.
I learned about my disease and an explanation of the options the medical industry had available for me.
The Medical community is a tight lipped non sharing community. With FF, I learned about the history of the various Operations and it made talking to and understanding the Drs. much easier.
With FF I shared with the people that had "Walked a mile in my moccasins ."
I have found much information and I am on the way. I got their FREE information which I found enlightening I found myself as comfortable with my disease as I could be.
They are a pleasure
Without this foundation, I never would have found the physician who correctly diagnosed the cause of my declining vision. I have a corneal dystrophy, which was misdiagnosed repeatedly. I was able to be treated and my vision was returned to normal. Prior to my contact with the foundation, I was misdiagnosed twice, with one physician claiming I'd had a stroke in my eye, rendering the vision loss permanent.
When I was first told I Had Fuchs Dystrophy I had no idea what it was or what I should do. The doctor who diagnosed it did not treat Fuchs and could not tell me much about it. He also knew of no doctor in Northern Nevada who did treat it. He suggested I go on the internet.
After I entered "Fuchs Dystrophy" in the search window on Bing, I found the Corneal Dystrophy Foundation and through them the Fuchs Friends support group. The CDF provided me with a wealth of information in their publications and the videos of their symposiums held every two years. The members of Fuchs Friends answered my questions and gave solid advice.
The videos introduced me to many doctors treating Fuchs and I chose one of them, Dr. Mark Terry, of the Devers Eye Institute Portland, Oregon to perform the transplants which cured me of Fuchs.
This group does great work in providing sufferers of the many Corneal Dystrophies great information and support to get proper treatment.
Although my mother had Fuchs Dystrophy and when she died at 105, was nearly blind from it, I never thought about the genetic connection to myself. My thorough glaucoma doctor, who has seen me every three months for years, never thought to test me for it--until I mentioned my history to one of his assistants. As the light bulb went off above his head, it went off for me as well, and of course it turned out that I too had the disease. When I was told this I was panicked, like so many others before and after me, and ran to the computer and found Fuchs Friends, this incredibly helpful group that has made all the difference. The huge amount of knowledge, the pooled experience of so many, the generosity with which the leaders and others give of their time and information, the patience and compassion with which they answer the same questions again and again, the calming effect of their positive message and their knowing so well what they are talking about, without ego getting in the way, their pointing the way to the most skiiled and experienced surgeons---there is simply no parallel to this in my long life's experience. Bob Bellizzi, Delores, Signe, Phil, and so many others in lesser ways, with nothing to gain, give so much to all of us it moves me to tears to think of it. I am waiting for my vision to really become a problem--but I'm in the hands of an excellent corneal doctor in NY who is monitoring me--and I know exactly what my next steps will be when I need to take them, and the peace of mind this gives me is an immeasurably valuable gift, from this superlative nonprofit group.
I found out five years ago that I have Fuch's Dystrophy. I have learned so much through all the wonderful coordinators of this site. I will be having a partial corneal transplant very soon and I chose my doctor because of all the wonderful things other patients said about him. If I have any concerns I know I will find the answer here.
My husband and I attended a symposium in Atlanta before my first surgery. This helped me choose my doctor. My first dsaek was in 2008. My second dsaek was in 2013. My vision is great. I can read books in regular print. I can thread a tiny needle. I quilt. I received help, support, and information from fuch's friends and the corneal dystrophy foundation. I thank them for all their help.
I was diagnosed years ago but many years after feeling the first symptoms. I was also in a lot of pain. The doctor who diagnosed me said very little about Fuch's so I went to research it online and words such as blisters, blindness, unable to perform daily tasks.... sent me into a panic and many tears. As a very visual person I saw it as close to a death sentence.
And then, luck, I found Fuch's Friends. I immediately sent them a note and immediately received a long welcome, full of positive comments.
Since that first contact, the foundation has constantly amazed me with with its professionalism (clinical details of condition, doctors list, other members experiences), its drive to make the web site more informative, the friendship extented by and to all members.
Going to symposium has reinforced all these positives. I have since forged life long friendships. We became an unbeatable support group, not just for Fuch's related problems but with any other issues.
I was diagnosed at age 58 with Fuchs' Corneal Dystrophy. I was told that a cornea transplant was in my future. At age 68 my doctor told me that there was a breakthrough in treating Fuchs' called a DSEK. He said he had seen the video of this surgery and thought he could do it just from watching the video. Believe it or not, I was considering letting him do the surgery. Luckily for me he left the group that I was going to. A new corneal specialist that was familiar with Fuchs' became my doctor and had just learned to do DSEK transplants and had done abut 10 of them.
It was about this time that I found Fuchs' Friends and the Corneal Dystrophy Foundation. I learned that it was extremely important to have a doctor that had performed hundreds if not thousands of these transplants. Through Fuchs' Friends I found Dr. John Goosey in Houston, TX. And, as they say, the rest is history. I had DSAEKs in both eyes in May and August of 2010. My vision with correction is 20/20. I can do close work, read, work on computer, etc without correction. I only need glasses for distance and driving.
I was diagnosed with Fuchs in 2003. At the time I was told there was nothing to be done, I would gradually lose my sight and perhaps I would be able to have an operation of a full graft.
My son discovered the Fuchs site I joined and read for two years finding helpful information and support. I was able therefore to make decisions based on this and contacted Moorfields Eye Hospital in London for a DLEK, partial graft, in 2005. A year later my other eye had a DSEK. Both operations were very successful and I can't imagine how differently my life would be now if I hadn't had all this knowledge from this wonderful organisation. I helped to organise a conference following my operations to help others who were wondering about the latest technique. 60 people in the UK came.
I am very grateful to the founders of Fuchs friends for all their hard work in starting and keeping the site so interesting and informative. Sylvia Jordan
I found out about this organization when I was first diagnosed and was seeking inormation to help me to cope this this problem. The amount of info that I have received is truly amazing as I traveled the road from newly diagnosed to seeking surgery resources to preparing for surgery, post surgeryu, and now, going through the process of being fitted with a RGP lens. Not only is the group a great reservoir of data but great providers of support as well. I would highly recommend the Corneal Dystrophy Foundation to any person with this disease or their support people.