The Corneal Dystrophy Foundation

Six months ago I was diagnosed with Fuch's Distrophy. My eye doctor just gave me generalities. and cadaver transplant is the only recourse. So I have been finding information wherever I can stumble on it.

One example, I am a ham, or Licensed Amature Radio Operator. One morning a couple months ago I ran across a radio net called EyeBank Net. Could it be that there is a radio net concerned with Fuch's Dystrophy? Someplace I can talk to people who have, and have had the same diagnosis? Someplace I could hear about the doctors who do the surgert?

I checked in to the net and asked about the name what the net did. I was told, ... well here's what they have on their website (https://eyebank40.net) ...

"The Eye Bank Net was organized in 1962 for the purpose of locating and arranging for the distribution of eye cornea tissue to be used in corneal transplant operations. We handled this traffic for over 30 years, until the internet took over this job. During that time, the Eye Bank Net assisted in the transfer of over 11,000 eye tissues. We are now a public service net and we continue to meet out of fellowship and to help keep the tradition of Amateur Radio in public service alive."

So I was disapointed to learn that there was no experience or expertise on that net. Boy, I had such hopes!

But not a week later I found the Corneal Dystrophy Foundation and Fuch's Friends!! It was exactly what I was searching for. I have talked to people in their group and watched a presentation by a promenent doctor and while I still have a lot to learn, my anxiety is greatly reduced.

I have two metal hips, eyeglasses, hearing aids and a lot of crowns and fillings. I am very happy that there are people who dedicate their lives to helping people in amazing ways. When my time comes for transplant, I will again put my trust in the people who do the surgery. I will stay active in Fuch's Friends to share my experience with the newly diagnosed people who join the group.

Carey Parks

During a routine eye exam in 2024 I was told I had “Fuchs Corneal Dystrophy”. What is that?! As I Googled and AI’d and even saw a cornea specialist I still had so many questions. Enter the Fuchs Friends, part of the Corneal Dystrophy Foundation. This group provides multiple well resourced educational pieces. Most useful for me is the Friends group. Every day, if I want, I receive emails with comments and stories of others with this condition. What makes this group stand out so much is the active presence of mentors and moderators who provide balanced, informed, kind information and coaching.
Although not rare this condition is not common enough for even eye doctors to have much experience with it. The CDF is THE leader in providing information, education and support to clinicians and patients alike.

I was scared. I needed cornea transplants and cataract treatment on both eyes. I contacted the foundation and a very special lady named Paulette came to my rescue with advice. She stuck with me after each surgery. When I had complications, she was there, either via the phone or email. She put my mind at rest and told me what I could do to heal faster. I have to admit, I didn't spend much time on the website because I have difficulty navigating such things. So I can't tell you much about the other support and the people at the forum, but if they are anything like Paulette, they are saints.

The Corneal Dystrophy Foundation is an amazing, supportive, organized and well run nonprofit. After being diagnosed with Fuchs Corneal Dystrophy, I feel so lucky to have found this organization. The information, reading, resources provided have been so helpful. The leaders of this group are also truly amazing and have helped me navigate the new issues I am facing. They are kind, supportive, and extremely knowledgeable.

This is a nonprofit that is exemplary in the information it provides and the support that it gives !!!

Fuchs Endothelial Dystrophy is a little known Cornelia disease which is estimated to affect approximately 6-10% of the population. I was diagnosed with it a year after cataract surgery, instead of before, which is not unusual given that so little is known about it, and it is often missed by many Optometrists and Ophthalmologist.

Faced with the continuing degradation of, and potential loss of eyesight, my wife and I started researching Fuchs Dystrophy, which led us to the Fuchs Dystrophy FaceBook Page, and the plethora of information available there as a result of the volunteers from the Cornea Dystrophy Foundation.

Let me tell you how scary it is to be diagnosed with a little known disease which can lead to becoming blind, when there are so few resources available to provide help. I’d like to thank, and praise, the Cornea Dystrophy Foundation group organizers, and group members, who have provided so much important and needed information. Without them I would still be looking for answers and solutions to this disease.

My story is a familiar one. I had been dealing with sight issues for years, but, was unable to resolve those issues through new glasses prescriptions that Optometrists prescribed. There was always a distance issue, that new prescriptions didn’t resolve. I tried to explain it to the various Optometrists but, they didn’t understand the issue.

Then about three years ago came time for Cataract Surgery. About six months after the second cataract surgery I was still bothered by brightness and glare that my surgeon suggested would go away by then. It did not. I continued with that surgeon and after another few months had to have secondary cataracts laser removed. The brightness and glare issues continued and I wanted to understand why. At my one year check up he diagnosed me with Fuchs Endothelial Dystrophy.

That led my wife and I to this Fuchs FaceBook group and our research regarding Fuchs. Which in turn led us to what I believe is one of the most important points one can learn from this group. Get a second opinion!

We read the daily posts and learned about the Fuchs Elite Surgeons listed on the group site. We live in California and found Fuchs Expert Dr David Hwang of UCSF.

Dr Hwang and his team checked my eyesight and made straight to the point comments as they documented my case. Comments such as “Visually Obvious, Quite Severe, and Astoundingly So” defined their diagnosis of my level of Fuchs Dystrophy.

We agreed to move forward and scheduled my surgery, the first of which, was completed without complications, on Oct 14, 2024. Dr Hwang advised that I would require DSEAK and Vitrectmony because the previous laser work to eliminate my secondary cataracts had damaged the Cornea.

A little over a week after surgery, after religiously following the after operation instructions, my surgical eye tested at 20/50, and continues to improve. That was, and remains, amazing to me. I can now see clearly out of my surgical (left) eye for the first time in 20-30 years. And I can tell it’s getting better daily. My right eye will be scheduled sometime in the next 4-6 months.

Again, thank you Cornea Dystrophy Foundation. Your hard work and dedication has improved my life by an incalculable amount.

I found out in 2012 that I have Fuchs Dystrophy. The doctor at the time told me that it was nothing serious and that I'd probably only need any kind of treatment for it once I was in my 70s. Fast forward about 7 years; I am barely in my fifties and starting to have problems with my vision. When I had an eye test to renew my driver's license, I failed it, even with my spectacles. I went back to my optometrist and she prescribed two new sets, one for driving and one for reading. I failed my eye test at the licensing authority again. After getting new spectacles for a third time, the optometrist mentioned that my Fuchs may be the cause of my changing eyesight, and she referred me to an ophthalmologist.

The first ophthalmologist ran a battery of tests, prescribed eyedrops and told me to return in six months, as my Fuchs was not bad enough yet to have any form of surgery. Over the next two years, I saw him six times. Every time he prescribed a different eye drop and at one point some mineral supplements. By this time I was not able to drive at all anymore and at times my eyesight was so bad that I could not cross a street safely on my own. I had five pairs of spectacles but with my eyesight changing during the day, none of them worked for me.

After two years, when I was hopeful that the ophthalmologist would do the cornea transplant we discussed before, he referred me to a colleague of his, stating that he does not specialize in cornea transplants. It took me three months to get an appointment with his colleague. After another battery of tests with her, she said that my eyes were in terrible condition and that I wouldn't be eligible for transplant surgery for at least another two years. I had Fuchs Dystrophy, astigmatism, severe dry eyes and allergies. She prescribed four different eye drops that I had to use a total of fourteen times a day. My life revolved around eyedrops. I knew that I would be blind within a few months, as I already found it difficult to work and impossible to drive, sew, read, etc.

It was at this point that I came across the Fuchs Dystrophy Foundation's Facebook page. I needed support and advice. And this is exactly what I got.

I wrote an email to the Fuchs Friends group, explaining my situation. Within hours I received resources; from a list of Fuchs specialists to what questions to ask when deciding on an ophthalmologist. I never considered that I had a choice, that I could vet doctors and not simply have to accept what a doctor told me.

I started emailing and calling ophthalmologists in my area. By this time I knew that a DMEK would probably be the best course of action for me and I looked for a doctor willing to listen to what I needed and answered my questions. I finally (through a friend but that is a story for another day) got to see Dr. Michael Attenborough in Wynberg. He ran a few tests and asked if I'd be able to be at the hospital for my first cornea transplant three weeks later. That was now almost six months ago.

If not for the guidance of the Corneal Dystrophy Foundation and the Fuchs Friends group, I would still sit in almost darkness, with little hope. Now I can go for walks on my own and soon I'll be getting new spectacles, which will enable me to drive. I can only say thank you and for those who have Fuchs, please, reach out to the Foundation and don't give up on finding the right doctor for you.

When I heard I had Fuchs Corneal Dystrophy, I had no idea where to turn or how to learn about this disease. I was so upset and googling and searching for anything and everything on the web. Nothing really gave me understanding, nor even hope regarding this disease and what I should expect in progression, treatment, etc. Definitely the Opthamolgist that haphazardly shared this diagnosis with me didn’t help in anyway!

Praise God, I happened upon the Corneal Dystrophy Foundation, and its connected “wiki” group, called Fuchs Friends. Not only did I find a specialist list here that enabled me to find a doctor who could confirm the diagnosis of Fuchs Corneal Dystrophy, and give me guidance. But what is more important is that I have found a group of people who understand my fear, my desire to understand, my eagerness to know/learn, and who are willing to share without judgement, and with care and concern!

I can’t say that I’ve learned everything I need to know, as anyone with this disorder will attest that there are so many differing ways that this disease affects one’s eyesight. But, it has been the most valuable tool in helping me to keep learning, to understand and to know what to ask doctors, etc. It has been a true blessing! Mary

Beginning in my 60’s my eyesight became increasingly resistance to correction by eyeglasses. Cataract surgery in my worst eye did not help at all.
Finally my optometrist said I had Fuchs Dystrophy and sent me to a cornea surgeon. That surgeon gave me literature that led me to the Corneal Dystrophy Foundation and all their information and their website where patients share experiences.
Thanks to this foundation, I found what questions to ask, how to find a good surgeon, and what to expect from surgery — and I felt very supported through the process.
I went from corrected vision of 20/60 and worsening to 20/30 and improving. The surgery gave me back my life. I might not have had the courage and confidence to go ahead without this Foundation.

Like so many, I was diagnosed with Fuch’s Dystrophy by an ophthalmologist when I went for a cataract consultation. The best thing he did for me was to provide the info on how to join Fuch’s Friends and access the Corneal Dystrophy Foundation. That’s where I got the information I needed to make an informed decision on what I was dealing with and how to move forward. Real people with Fuch’s Dystrophy who were willing to provide information, answer questions and offer suggestions. The materials provided information on what I was dealing with and doctors who could help. Two things I learned—see an experienced cornea specialist and get a second, third or more opinions until you have the answers you need. This group and the Corneal Dystrophy Foundation are an invaluable tool to so many and I am grateful I found them.

I was diagnosed with relatively advanced Fuchs dystrophy at age 44. Fuchs Friends and the Corneal Dystrophy foundation helped me know I was not alone and find a world class surgeon. I’m so thankful for their support and for my restored vision.

I was told by my Macular Degeneration M.D. that I had Fuch's Dystrophy and he could no longer help me. He even went so far as to close my case with him. He had no advice and didn't know any Cornea Specialists he could recommend to treat this condition. I was devastated and lost. I found the Corneal Dystrophy Foundation on the Internet. I believe the information I learned from the website, and the wonderful support I receive from the people at the foundation saved my eyesight. I received a recommendation to a fabulous, world-renowned cornea specialist whose office was only an hour drive away from me. Since then I have had one surgery on my right eye and I am astounded at the results. Without the Corneal Dystrophy Foundation, I would have been left to navigate a very scary disease without any support. I could have lost my eyesight. I am very grateful to all of the wonderful people at the Corneal Dystrophy Foundation.

Being diagnosed with an eye disease, being told you will need eye surgery, and knowing your vision is getting really bad, can be very frightening. Joining this support group was the best thing I ever did.

I found out all about the eye disease I had, and the surgery that could "fix" it (there is no actual cure). The other members relayed their experiences and told of their results. They explained that while frightening to think about, the surgery itself was quite simple and painless.

Using the information I'd gathered in the support group, I did more research online, studied and even watched videos of the surgery involved, and just educated myself. It made the entire process proceed with as little anxiety as possible.

Even though it's been 15 years since my surgeries, I still read posts from the group, and if I can help anyone with my experiences, I will respond to the posts. It's a wonderful group, and it helps so many people. I have recommended it to others I've known who have the same eye disease I had, and my cornea surgeon knows all about it too and will tell his patients about it.

I was diagnosed with Fuchs dystrophy after cataract surgery from a highly regarded surgeon at Wilmer eye in Maryland. After taking the patch off from the surgery and I could not see it was just a matter fact - oh you have Fuchs dystrophy. Again, I could not see. I was devastated, confused and emotional wreck. I came home and got online and found the Corneal Dystrophy association, Fuchs Friends. After I was accepted as a member, the founder himself, Bob Bellizzi, posted to my post and calmed me down and gave me help to start figuring out what was going on with my eyesight. I got no help from the highly regarded surgeon at Wilmer. And I should not have had cataract surgery without knowing this diagnosis before hand. I do believe because of my age the Surgeon felt it was going to be a regular surgery, at the time I was 56. The corneal dystrophy foundation has advised and help me tremendously to getting the best care for my eyes. I literally read every post every single day and am continually lucky to learn other peoples experiences and I’m very grateful that this group is there THANK YOU from the bottom of my heart for the information and help recieved! To me, it’s been immeasurable and irreplaceable!!!!

When I was first diagnosed with Fuchs Dystrophy, I was deeply depressed. Then-current treatment meant recovery periods of 1+ years with limited vision in each eye and problematic results. I went to five specialists in ophthalmology in Miami, and they did not know about dramatic advances in treatment, even the renowned Bascom Palmer Institute. I was going to spend years without driving and with problems in reading. Then through the internet I found the Corneal Dystrophy Foundation and new technologies and surgical treatments. I immediately perked up! I went to the next annual meeting of the Foundation and heard the keynote speaker who would end up being my surgeon. Recovery times were reduced to weeks and I could continue my usual lifestyle in retirement. I spread the word to my blood relatives as this is a genetic disease. Only through the dedication and perseverance of its volunteer staff, the Foundation enlightened me to my cure. Now almost 15 years later, I still see 20:30 corrected in both eyes with no further treatments or special care. This organization literally saved my mental health and enables me to travel, read and drive in my retirement. Yes, I am forever grateful to CDF.

Twenty two years ago, My husband Bob Bellizzi was told that he has Fuchs' Dystrophy. We thought he was going to be blind. Bob was in the computer industry and the first step that anyone does is to go to google for information. He found very little and that caused him and Dorothy Action another person who was serching for information to establish a website and start sharing what they learned. They worked so well togetheer that Dorothy became the other woman in our life. In 2004 the Corneal Dystrophy Foundation was formed with a goal to provide the latest research information on corneal dystroophies. A need for a private, support group was vitial. A place where questions could be answered and experiences shared. We now cover many countries via the internet while sharing our stories Celebrating 20 years of helping people. How Great is that.

I'm Kemart Paller
From Philippines
I have a eye problem since elementary
Some of doctor here said that I have a "Lazy eye" since elementary I can't visualize things clearly far or near especially letters please someone can help me for.my.problem or any study's about my condition thank you so much

Hoping for your kind response
pallerkemart@gmail.com

I did not find Fuch's Friends until after I had both of my DMEK's, but I have learned a wealth of things since then about other eye diseases I have. And--hopefully I've been able to help others by sharing my experiences. This ability to share back and forth about such a rare disease with others who have it is life-changing! I am blessed to have found them!

I was diagnosed with Fuchs Corneal Dystrophy (FCD) in 2008 at the age of 56. I learned that it was a gradually progressive disease which, eventually, would likely lead to significant visual deterioration and need to be addressed with a partial corneal transplant. In the years since, I experienced a number of other visual problems (cataracts, retinal issues) but, eventually, it became apparent that the progression of FCD, along with my advancing cataracts, was profoundly affecting my visual acuity and quality of life.

I’m fortunate enough to live in a metropolitan area known for being a center of medical excellence and was able to find a cornea surgeon with an excellent reputation. He confirmed my need for cataract surgery combined with a Descemet’s Membrane Endothelial Keratoplasty (DMEK) - essentially a current state-of-the-art partial thickness corneal transplant. One eye at a time would be done, each with a combined procedure.

As the months went by and my date of surgery approached, my anxiety increased - largely due to the fact that no one I knew had FCD, and even my primary care doctor was unaware of it. I came to realize, as common as cataracts are, that’s how uncommon is FCD in the general population. It was an example of a “lonely disease” - uncommon enough that it’s difficult to find fellow patients, those from whom one can receive important information, experience, and emotional support.

Fortunately, searching for such support led me, just a few weeks before my surgery, to the Corneal Dystrophy Foundation and Fuchs Friends. There I found what I was hoping for - others with FCD, some like me approaching surgery for the first time, and a great many who had already “been there and done that,” and who could offer a kind, experienced ear and incredibly valuable information and support. That, in conjunction with the informative literature about FCD available to all Fuchs Friends members, enabled me to approach my surgery with a much greater sense of what to expect, both during and afterward, and thus with much less anxiety.

The benefit of the procedure has been everything I had hoped for, providing greatly improved visual acuity and quality of life, and I’m looking forward to the surgery on my other eye in two weeks’ time. I credit my new friends at Fuchs Friends for having made all the difference!

As with many others, I had never heard of Fuch's Dystrophy when i was diagnosed. I, at first planned on having the cornea specialist in my ophthalmologist's office do the surgery, but I felt very nervous about it, and put it off. I didn't want to think about it. When a friend suggested I get a second opinion from her doctor's office, Chicago Cornea Consultants, I scheduled an appointment with her doctor, Parag Majmudar. I felt so comfortable and confident with Dr. Majmudar, and he gave me literature about the dystrophy. He also told me about Fuch's Friends. He wanted me to have the surgery soon, because my other eye was getting bad.

I joined Fuch's Friends that night, and am so glad I did. I read about someone who had Dr. Majmudar do her transplant, and was extremely happy. She said that the doctor trained other doctors to do the procedure. That convinced me to have Dr. Majmudar do the surgery.

If I didn't read about others' experiences, I wouldn't have known how to handle the time after the surgery, being on my back, and also warning that the bubble would obscure my vision. That would've scared me and I would've thought something was terribly wrong. I also read about how great vision could be after the surgery, and that it takes more time for some people. I still can't believe how clear and sharp my vision is, and it keeps getting better!

Fuch's Friends has helped me in so many ways. One is information on possibly needing to use extra drops around the time of vaccinations. I called my doctor's office, and was told to use four, rather than two, drops the week before and the week after vaccinations. Joining Fuch's Friends was the best thing I could do!

I was diagnosed with Granular Corneal Dystrophy about eight years ago. It is a rare disease and this can contribute to feeling isolated as you experience symptoms and treatments . Fuch’s friends has been a huge resource and support throughout this journey. The advice is level headed and well researched, and the support is friendly and informative. It’s a great place to go if you have any questions, highly recommended!

I was diagnosed with Fuchs corneal dystrophy in my 30s but had very slow progression. I had difficulty finding an ophthalmologist who would explain anything about Fuchs or what I could expect. I even had 2 doctors who had acted as if I were malingering when I asked about it. They simply said "yes, you have Fuchs" but then seemed belligerent and wouldn't say anything else about it. I did finally find a local ophthalmologist who had some background in corneal issues and at least explained that the state of the art was partial transplants and knew enough to take great care during my cataract surgery . However as he said the word "transplant" I had a very panicky feeling and was quite scared. I finally found The Corneal Dystrophy Foundation online, joined, and began to get more and better information. Through hearing what others had been through and sharing the informational booklets the Foundation puts out, I felt much more comfortable with my diagnosis and what I was experiencing and deciding to have the procedures I needed. Having never met anyone else with this diagnosis, I was feeling very alone, and it was so good to be able to hear others out there. Though the Foundation I was able to find one of the top tier Drs in the country and have my DMEKs (partial transplants) and received the miracle of clear vision. I am not sure what would have happened if I hadn't found The Corneal Dystrophy Foundation. I might still be avoiding surgery and losing so much in my life with my poor vision. They have made a real difference in my life.

I was in a state of shock when first diagnosed with Fuchs Dystrophy. My optometrist had noted a change in my cornea at a regular annual exam when I expected nothing more than a stronger eye glasses prescription. It wasn't until 15 months later that I received the actual diagnosis from a corneal specialist - this consultation having been delayed by a move to another state and then the Covid lock-down. I had never heard of Fuchs. I had just retired and moved be near my grandchildren. I enjoyed excellent health, a very active lifestyle and cared for my toddler granddaughter several days a week. How would I manage everything with such compromised vision? What options did I have? It was an enormous relief to discover the Corneal Dystrophy Foundation after I went on-line to research the disease. I read stories of other patients, realistic depictions of the disease progression and surgical alternatives, and supportive notes while making decisions for my own continued care. I found a list of recommended corneal surgeons that led me to an excellent specialist in my own region. Thanks to this group, I was comfortable making the decision to have a triple DMEK performed on one eye in August 2022, with excellent results. In one week, I will have the same operation on my second eye. The prognosis for my vision is very good, and I will probably only need a mild glasses prescription for reading. Best of all, I can continue caring for my granddaughter and now, new little grandson; enjoy reading and running; and savor the beauty of the world around me as I have not been able to for the past few years. Without the information and support provided by the Corneal Dystrophy Foundation, I would not have found my way so quickly to such a happy outcome. I am most grateful to this group and those who manage it.

In 2011, I was diagnosed with a Eye condition, in my right eye, that I had never heard of, Fuchs Dystrophy. In 2014, my eyesight in that eye had deteriorated to such a point that I had a prodecure called DSEK to input a donor cornea lens into that eye. It worked great. At that point I was learning about this disease mostly from my eye surgeon and some limited readings on the Internet.

As expected, my left eye started also to lose good visual acuity and in Dec of 2019, I started seeing an Fuchs expert in New York City, who said it was a matter of time before I would need a cornea transplant in this eye, as well. He also recommended that I join an online group for people with similar conditions, The Corneal Dystrophy Foundation.

I did join and I can even describe in words how enlightening this site has been to me and I'm certain all the members that partake in it. Fuch's Dystrophy is pretty much unknown to almost all people and even some professionals in the eye business know very little about it. So, basically we are a small group of people around the world who have this inherited disease.

Anyway, at first, I was just receiving usually daily inputs into my email from this site. The more and more I read about the details of people with similar conditions and who the "go-to" experts are in the US who treat and operate on this condition, the more confident and knowledgeable about this disease. The amazing thing is you get to read and ASK for feedback about ALL your fears and questions and doctors and advice for this condition which so few have.

As I started gaining more information, I was able to determine my BEST plan of action for my now low vision left eye due to Fuchs. I was also able to ask my Doctors and Surgeons much better questions for how I wanted my action plans to be for my next Cornea transplant.

I ended up having my transplant on my Left eye in the Summer of 2020. I used one of the experts in this disease 240 miles from my house based on feedback from this site. I also knew the best way to remain pretty much on my back for days so the transplant would take with much greater certainty.

My eyesight, is now 20-20 in one eye and 20-40 in the other, without glasses. It is amazing what these doctors can now do to correct this really bad disease for eyesight. I still read the posts everyday and now have become an active contributor to new people asking for help and who are the best doctors.

I feel this site is sent from heaven as the professionalism and details submitted by people like me to educate folks like me with this condition takes so much uncertainty out of this not fun disease.

I would hope and pray that most medical conditions, especially ones that are very limited in their worldwide percentage of patients would have a site like The Corneal Dystrophy Foundation , as it prepares you with information with like minded people and then directs you with this knowledge to take charge of your medical needs.

Sincerely,
Mark Hecht

A visit to an ophthalmologist for cataracts brought about a surprising additional diagnosis...Fuch's Dystrophy. I had never even heard of this. The ophthalmologist offered very little information and I left quite overwhelmed and frankly, very frightened. Once at home I began an internet search and came across the Corneal Dystrophy Foundation. Knowledge is power and the plethora of information presented calmed me and allowed me to begin thinking in rational, informed terms. Rather than thinking in terms of 'woe is me' I began thinking in terms of proper decsions to implement one of the many avenues of treatment available. Additionally, I was linked with Fuch's Friends. What a huge comfort! I was not alone with this and many of the friends could offer 'real world', 'rubber meets the road' tales about what they had done, how it worked for them, and little tips to help me manage. The listing of specialists in Fuchs steered me to just where I needed to go to put my precious eyesight in the best hands. Words truly cannot convey what this support has meant to me.
Pamela Morgan
Fuchs Diagnosis 2019

Recently, I was diagnosed with Fuchs Dystrophy. The news was especially daunting and frightening for me, since I am already blind in one eye. Luckily, I quickly got my bearings when I found the wonderful Fuchs Friends Group. Not only was I better informed by the Group but was immediately assisted in my search for excellent and experienced medical professionals, connected directly with medical staff in my area, and secured necessary appointments. I was even personally called by the Foundation's executive director. For me, that is why the Corneal Dystrophy Foundation is truly a Great Nonprofit that has already far exceeded my expectations. - Greg Moore

The Corneal Dystrophy Foundation is a wonderful supportive group. They provide education and assistance with physician selection. Additionally, members are quick to respond to questions about the disease and strategies to cope. I have found the group an excellent resource

For at least five years I was dealing with a corneal dystrophy that made reading extremely difficult. The doctors I consulted weren't any help. When I found Fuchs Friends and visited their doctor recommendation site, I learned that a doctor was recommended at who worked at UCSF, a 90 minute drive from my home. He was very helpful and performed the simple procedure of clearing my corneal tissue off both eyes. It was a ten minute procedure and the cornea grew back within six weeks. I am very relieved that I got the help I needed to be able to read again, thanks to Fuchs Friends.

I was diagnosed with Fuchs Dystrophy in 2018 and it was scary at first knowing that I had an eye condition that could gradually get worse. It was totally unexpected. After finding the Corneal Dystrophy Foundation things changed for me. I knew that I was not alone and there was a whole network of people worldwide sharing stories and providing invaluable information. I want to thank Bob Bellizzi and his wonderful Angels for all that they do for everyone in this group!

I was fortunate to discover the Corneal Dystrophy Foundation. I was diagnosed with Fuchs dystrophy 15 years ago and the disease has progressed during that time. I needed to have a corneal transplant and also cataract surgery. I normally don’t worry about medical things because I want to stay healthy. But the idea of surgery on my eyes was worrisome. My worry increased when I learned that there are different surgical procedures for a corneal transplant. However, information provided by Bob Bellizzi at the Corneal Dystrophy Foundation made me much more confident in making the decision to have a corneal transplant and cataract surgery in my right eye one month ago. And I’m so glad I did. My vision has improved significantly. It’s amazing! Michael House

Not only did Fuchs Friends direct me to the greatest eye surgeon ever, Dr. Gorovoy of Ft Myers FL , but through their network I was able to find a company in Japan that could provide the medication I needed post op.(Which was no easy task during the height of COVID.). I do not communicate on line as much as I should, but I certainly owe my new vision to Dr Gorovoy and the Fuchs Foundation. I had both DMEK and DSO with great results and regained an active life. Thanks Bob Belizzi and the Fuchs Dystrophy Foundation for all you do to help people around the world!

Dynamic group, offering a variety of information about topics most people have never heard of. The printed material and physician lists are outstanding. The email thread is helpful and offers support when it's needed most.

It is scary to gradually and then more rapidly lose ones visual acuity - it progresses from low resolution to blurring and limiting many aspects of everyday life. It’s helpful to know the cause but then the choices on remedies and timing and surgeons and recovery can be bewildering. A small fraction of society suffers from Fuchs and fewer end up disabled enough to seek a transplant. There is no critical mass of knowledge and best practice outside the practices of a few pioneering surgeons. Against this backdrop, The Corneal Dystrophy Foundation provides information, reassurance, stories and a network of fellow patients, past and present, that form the life raft that gives the courage and ability to weather the storm. I just completed a triple DMEK surgery on my second eye. No way I would be here without the gift of this Foundation.

Finding Fuchs Friends through the Corneal Dystrophy Foundation was truly a miracle. I was diagnosed with Fuchs Dystrophy in 2015 and didn’t know where to turn. Fuchs Friends sent me videos and information that educated me on the disease. Then the online forum introduced me to the stories of patients with the same condition and their experiences with diagnosis, treatment and surgery as well as surgeons within my area. I found a surgeon in my area who was trained and skilled in the particular surgery that I needed. The surgery was successful! Now in 2021 my other eye needs surgery and I was able to return to Fuchs Friends and again educate and review new surgical procedures for the eye and find important, useful recommendations for my path forward. Thank you Corneal Dystrophy Foundation!!!

When I was diagnosed with Fuchs Dystrophy, the doctor explained the disease and indicated it would be several years before anything would need to be done. I started the long drive home trying to make sense of all I was told.

Afterward I started searching the internet for information. There seemed to be a lot of information, some seemed conflicting. After speaking with my optometrist, he suggested that I find a support group. It was then that I stumbled upon Corneal Dystrophy Foundation. They had good information and a site I could join to hear from others about their experiences as well as ask questions. It was a game changer for me. I felt more confident when the time came for my surgery. I knew what to expect and what questions I should ask.

I am very grateful to the Fuchs Dystrophy Foundation for all they do.

I was diagnosed about 8 years ago with Fuch's. The symptoms were not too bad. The doctor didn't provide very much information except that one day I'd have to have a cornea transplant. At the time, I was dealing with other medical issues and put off thinking about it. However, as it got worse I did some research and found Fuch's Friends and the Corneal Dystrophy Foundation. The literature they sent was very informative! I was relieved to know that there are other people that have gone through this and what's more, that they are so supportive and responsive and encouraging. The public needs to be educated about donating corneas along with other organs and about the symptoms of Fuch's. And that's what the Corneal Dystrophy Foundation is helping with.

Although diagnosed with Fuchs over a decade ago, I never experienced any of the symptoms that are associated with the disorder. Eventually, though, my vision was affected by cataracts and my surgeon recommended having DMEK at the same time as cataract surgery. Members on the Friends of Fuchs sites offered a lot of useful tips on managing post-surgery, and both the procedure and the surgery went well. Surgery on my second eye, however, was a different experience altogether, resulting in three rebubbles with a total of 16 days flat -- completely so -- in bed. Again, I found support in the Friends of Fuchs. I am very grateful to them for their advice (non-medical) and encouragement. Bob and the others have done an amazing job.

I've worn glasses since I was 5. I'm 67 now.

This year I was diagnosed with Fuchs Disease and thanks to this groups web blogs, I was able to learn enough about Fuchs to avoid possible loss of sight.

Having cataract surgery by a top tier expert in my disease was imperative to protect my sight.

I found all the information, support and care from these wonderfully warm and receptive advisors on this website.

John O.

Just a really terrific way to stay connected to what's most current and feel supported and not alone as well. The information provided by real people and their nicely detailed stories of experiences is enormously helpful educationally and emotionally as we all navigate our personal experience. Join..you won't be disappointed.

My experience with this nonprofit organization began in March 2021, during a cataract surgery consultation with a local cornea specialist who told me I have Fuchs Corneal Dystrophy. He also said my cataracts were advanced enough for surgery but advised the surgery could make my Fuchs condition worse. I had never before heard of Fuchs. My several questions, he answered most with, “let’s wait and see.” With that, I was not only shocked and scared by the prospect of loosing my ability to read and live independently, I was left speechless by his lack of communication and his lack of doctor-to-patient advise. From that first exam, his office scheduled me for a six month recheck (Sept 2021). At the recheck exam, the cornea specialist told me my vision was good and I didn’t qualify for cataract surgery. I still wonder how that could be and told him, “but everything is blurry.” He said it was my Fuchs. I did not believe him entirely because over the six months between appointments, I researched Fuchs disease. I was then armed with information about Fuchs and cataracts. I found the “gold and diamonds” for Fuchs patients, the FUCHS CORNEAL DYSTROPHY FOUNDATION. It is an organization with valuable information and links to FuchsFriends where you can read posts by others who are on the same path. I recommend all who have Fuchs and those who are related to someone with Fuchs, by family or friendship, to go to the Foundation website and read about the disease. People with Fuchs are
isolated because the disease is rare, so don’t be surprised if you’re overwhelmed. Just sign up for FuchsFriends and read the daily posts. Eventually you will learn the meaning of the acronyms (like DSO, DMEK, etc.) and the value of seeing a top-tier cornea specialist who specializes in Fuchs. Since my recheck exam in September 2021, I have had cataract and Toric lens surgery. I can now see blue light spectrum; the yellow and grey cast is gone, and my astigmatism is gone! Although I still have Fuchs and one day I may need corneal surgery, I’m no longer overwhelmed and scared, thanks to the Foundation. I travelled to one of the best cornea specialist in the world, Dr. Gorovoy in Fort Myers, FL. I can say it’s worth the effort to see a specialist who specializes in Fuchs. There are a few top doctors in the USA and you can find them by the Fuchs Corneal Dystrophy Foundation and FuchsFriends.

I've been aware of this organization for more than 10 years now. They are an invaluable source of reliable medical and scientific information regarding diseases and treatments of the cornea. The information and support provided as been invaluable to me.

I was diagnosed with Fuch's dystrophy 40 years ago. I was told I wouldn't go blind or need anything done until I was a little old lady. So here I am. This group is remarkable for so many reasons. I have received free literature and read their emails daily. As a result I am very well educated about the disorder, specialists, extremely helpful information from people who have had the needed transplants and just plain wonderful support. This organization has made a potentially frightening disorder into an obtainable reality. Thank you to Bob Bellizze and other administration volunteers who keep this non-profit alive.

This is critical for sufferers of the obscure Fuchs Dystrophy, a corneal disease. I had never heard of it until I got the diagnosis 4 years ago. Since then this NGO has been a critical link in the patient-doctor chain. Doctors and doctor ratings are very difficult to find, even with the internet, not to mention sympathy and practical advice. This organization helps greatly with that.

I was diagnosed with a type of corneal dystrophy called Fuchs Corneal Endothelial Dystrophy in August of 2021. I joined "Fuchs Friends" three days after my diagnosis. I received a warm welcome from members of the group, and was encouraged to find a "top doc" corneal specialist for the partial corneal transplants I needed. Through the group, I found out about Dr. Mark Terry, who happens to live in the same area I do! I waited another month for a second opinion with him and had my first partial transplant on October 19th. My second is scheduled for December. I'm grateful to the members of The Corneal Dystrophy Foundation for guiding me toward Dr. Terry and for being available for support and encouragement. I also ordered their free literature and received it last week. It's very informative and includes stories of the experiences of individual members of the group. I'm very grateful I found The Corneal Dystrophy Foundation and Fuchs Friends.

Back in 2004 at a routine eye exam my optometrist asked me if I found my self wearing sunglasses even on overcast days. Surprised, I said "Yes, actually I do". She had spotted the early signs of Fuchs Endothelial Dystrophy. I had never heard of it and she had never seen it in practice before. Many visits to specialists followed and without the invaluable information, advice and help on the Fuchs Friends website, I would have been utterly lost and hopeless. They enabled me to fully understand what was happening to my eyes and gave me the information I needed to properly discuss the condition and treatments with the many experts I encountered over the years. Four corneal grafts and two cataract surgeries came along in the next eight years and my eyesight has been stable ever since. This is an excellent organisation and I am so grateful for all their generous support.

Diagnosed with Fuch's 4-5 years ago. Qualifies an a NORD or rare disease. Im a physician and had never heard of it in training or in practice. This website is invaluable for those who are newly diagnosed, scared half to death because their vision loss is so insidious and often missed by their basic opthalmologists. You get info about which doctors have the most training and expertise, what to expect at that appointment and pre- and post surgery. You get some decent technical advice from some of the group curators. If you need one, you can always get a pep talk from someone in the crowd. And the site has a very good virtual library.

I was diagnosed with Fuch's Corneal Dystrophy many years ago but didn't have problems until 2012. I went to a couple of ophthalmologists who said I should have surgery but wasn't completely convinced and wanted another opinion. I found the Corneal Dystrophy Foundation on the Internet and contacted them. I immediately received an answer with a recommendation for a gifted surgeon specializing in Fuch's and who practiced very close to my home. I went to him for an opinion and had surgery in 2012 and 2013 on both eyes for Fuch's and cataracts. In 2020 I had an accident causing one of my IOL's to dislocate and requiring complicated removal and replacement. Of course, I went to my nearby specialist, who performed the sight-saving operation. I can't thank the people who monitor this group enough for their dedication and professionalism.

I was diagnosed with Fuchs Dystrophy in early 2021. A friend discovered this group for me and I am so grateful. I have learned so much- after educating myself by reading so many posts, I sought out the best doctor recommended by members of this group in my area that specializes in Fuchs; Dr. David Hwang @ UCSF. I have since had a triple DMEK IN July 2021 and now have 20/20 vision in that eye. I will meet with my doctor mid September to discuss doing my other eye. I have asked so many questions and received so much information from this website……it has helped me so much to hear others experience with navigating this rare eye disease. The literature I received through this group was also very informative & helpful.

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.

~Kristin H.

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

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 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.
 
Most Sincerely,
Grace, D.
New Jersey
U.S.A.

 

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 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.

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.

Esta Herold
Austin, TX

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.

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

Gerry Cohen

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.

I was diagnosed with Fuchs about 20 years ago, but it did not begin to affect my vision badly until 2006. At that time, my doctor suggested a full cornea transplant and that is when I started searching for other answers and found The Corneal Dystrophy Foundation and educational seminars and emails and learned there were much better options. I attended a conference in Orlando, FL in summer of 2007 and discovered there was a surgeon in my hometown who had been trained by one of the speakers at the conference!!!! Immediately, I went to see him and shortly thereafter had the partial transplant/lens implant surgery that restored vision in my worst eye. Two years later, I had the same procedure in my other eye and results have been amazing. I feel The Corneal Dystrophy Foundation was an answer to prayer for me and I am forever indebted for the work of those who founded it out of necessity to get help for all of us with Fuchs. THANK YOU!!!!

I have belonged to this group since before my first transplant in 2007. They are a kind and informative group. They keep us current on the latest medical advances for our disease and the members provide support before, during, and after surgery. When people are diagnosed with Fuchs' they are usually shocked and afraid of losing their sight. This group educates, helps people find the right doctor, and can answer many of your questions.

When I lost vision in one eye I was terrified and after a diagnosis of Fuchs Dystrophy I was scared and confused. Fortunately I found the Corneal Dystrophy Foundation online and that discovery changed my life. I read all I could from the vast assortment of information available as well as the questions and answers posted daily. I went into surgery with confidence in my doctor because i had chosen him from the postings of other patients. i felt totally prepared, knowing what to expect and had no surprises. I wrote about my experience online to perhaps help someone as I had been helped. The volunteers are wonderful, generous people who I am sure have helped thousands of people who have found themselves in a scary situation and they are there with reassurance and help.

My experience with FUCHS cornea transplant started out badly with a local surgeon who offered up his own opinions on post op care. Unfortunately, things went badly. The great volunteers on this website patiently informed me about what has worked with others and soon I was able to select a surgeon who had the experience and knowledge to re-do the surgery and later to operate on the 2nd eye.

I credit these knowledgeable volunteers with saving my vision. They are the best!

Paul, Kennewick, WA

I am 31 years old and was diagnosed with Fuch's Dystrophy about 4 years ago. It was a shocking diagnosis to both my doctor and me. I was told at 27 years old that I will lose my quality of life because my vision will go, and that I will then need a corneal transplant - but no one can tell me when because I'm so young. I had a lot of emotions and my dad got on the computer to do research which led him to this group. To say they have been helpful is an understatement. I am no longer scared about what the future holds for my eyes... and any time I have any questions about a new symptom or anything - the group is right there to help me through.

I am a Canadian and found this site most helpful as I had little information and bad guidance from my local ophthalmologist. I've learned so much about this disease -Fuchs- that I am now able to go ahead with confidence to their recommended surgeon in Toronto. If all a member does is just read every email posted it is an extremely helpful, worthwhile 10 minutes a day .

I am a recent member of the Corneal Dystrophy Foundation. I have found them to be quite informative concerning the condition and very helpful when it comes to choosing a physician. I am glad to be a member.

Being diagnosed with corneal dystrophy is the beginning of a venture into the unknown for many people, including me. For at least in my case, the ophthalmologist's diagnosis was just that, a diagnosis with no other information. I believe that the reasoning was that I didn't need to know any more because I was not at the time in acute need of surgery. I found The Corneal Dystrophy Foundation through internet search, and joined Fuchs' Friends, which has been a most informative and reassuring experience. I'm a firm believer in the adage that knowledge is power, and information is the most valuable tool we can possess. I commend all associated with the group for smoothing the road on what can be a complex journey.

When my husband was diagnosed with Fuch's Corneal disease, I searched the Internet and found this group. It provided me with all of the answers that I had questions for, about this disease. It provide me with lists of doctors in my area that specialize in Fuchs. As a result, my husband had 2 corneal transplants, and this restored his vision.
It is all a result of the knowledge that I gained from the Corneal Dystrophy Foundation.
We'll be forever grateful for the work they do.
Sandra and Ed Martin

I found this organization and their Fuchs Friends Yahoo group this summer after being diagnosed with Fuchs. It has been a godsend -- a wonderful resource for information and support through the confusing journey of figuring out what I have and what I need to do about it. The yahoo group is monitored closely by staff and board members who share their extensive knowledge and experience, which helps to ensure that the information shared is current and correct. I especially appreciate their emphasis on making sure that the group is providing information but not giving medical advice. There are many questions that are answered with a gentle reminder that some issues really need to be addressed by a doctor in addition to getting feedback from the group. Also available are informational materials and a doctor list (free) and DVDs of past educational symposia for a fee. All in all, a terrific organization.

During a period of dealing with other health concerns this year. I was diagnosed with FCD. I really did not have time to focus on this as I was told I may eventually need surgery but years down the road. I came home and did a search on the internet so I could start to learn about Fuch's . I found Fuch's Friends website which is made possible by the Corneal Dystrophy Foundation and decided to join. I thought I could learn a little before I needed surgery down the road. I read all the posts each day and started to realize that the disease was affecting my life way more than I realized. I had just learned to cope. The thing that made me realize that I probably needed surgery soon was an incident that happened soon after seeing a second Dr. who told me I did not need surgery yet. Come back in a year. I was driving as the sun was setting and I was totally blinded by it and had to stop the car in the middle of the road. I could only think about what could have happened if I had had my 2 grandsons in the car and someone would have hit it.

I decided I needed to see one of the doctors recommended on the site. I did and had surgery 5 weeks later done by one of the top corneal surgeons in the county. The second is scheduled for Nov. I would never have known any of this without FF and would have still been just coping. Now I can see things at night like never before. The world is a totally different place at night for me and I have only had the first surgery.! The things that I have learned from The Corneal Dystrohy Foundation and Fuch's Friends have been invaluable to me. I am very thankful for the support from members and moderators and this journey would have been much more difficult without their help. I more than likely would still just be coping.

The fuchsfriends yahoo group is made possible by the Corneal Dystrophy Foundation. If you have Fuchs or have a family member or friend with Fuchs, membership in this support group is a must. I was diagnosed over 20 years ago and could find nothing at that time to educate me on this disease. Fortunately, I found the Corneal Dystrophy Foundation website and their Fuchs Friends support group about 7 years ago. There was a symposium held in my area shortly after that which I attended and learned a great deal about the partial transplants that were then being done. My corneal specialist knew nothing about these partial transplants and was only doing full thickness transplants. My vision quickly deteriorated in the last 2 years and, only because of Fuchs Friends, I knew what procedure I wanted and what doctor I wanted to do it. As of this month, I am Fuchs Free and have crystal clear 20/20 vision. This Foundation and support group provide invaluable support and information.

I subscribe to a forum or Yahoo email group related to the Corneal Dystrophy Foundation and I believe that is also managed by by them. As a member of the email group I was able to learn a great deal and connect with others who were going through the same thing as I. If I had questions they were usually answered by someone in the group on a timely basis. I have had both of my eyes corrected now and am blessed because of that. Since I no longer have the problems I rarely have the need or time to stay involved, but do still receive the emails just to stay connected.

I have been a member for many years and gained much insight and knowledge about Fuch's. I found the Doctor who did my surgeries through this group and have had a very good outcome. I have gone to two sysposiums that Fuch's Friends has had and meet many wonderful people. We have just recently started a local group here in the Chicago area and it is go great to talk to others with my eye disease.

The Fuchs' Friends Forum has provided me with a wealth of information and advice, especially when I was first diagnosed. Through the site I found a specialist who performed a Corneal Transplant on me. The results were miraculous.
I think the Foundation which supports this group has done a great service to those who suffer from this disease.

Wonderful group of caring and very knowledgeable people who have provided excellent information about Fuchs Dystrophy, including cutting edge transplant techniques and medical providers in various areas of the US. This knowledge has helped me and many others to locate and converse with corneal specialists to obtain the best care available for our relatively rare disease. I first joined this group in 2005 when diagnosed, and returned this year when I became symptomatic. Through this group I was able to locate and schedule transplant surgery with an outstanding specialist.

Joined this group as soon as I was diagnosed with Fuchs. Extremely helpful. Thank you for all your expertise.

Great group. Helped me through my partial corneal transplants for Fuch's Corneal Dystrophy over the past 10 - 11 years. Always had the latest technical information available on the web site and discussion group.

Finding the CDF was a godsend to me when I was desperately trying to learn more about my corneal (Fuchs) dystrophy. I was in the dark about my options for management of the disease, options for care and, ultimately, surgery. I cannot say enough about the weight that was lifted off my shoulders when I opened the door to the CDF. Knowledge is power, and support of peers and experts gives one hope. Empowerment and hope are a huge part in the processes of healing and wholeness. Thank you, CDF, for giving me both!

They have so much knowledge and have helped so many in ways.

All the information and support I could ever imagine needing was provided by the wonderful organization.

They have been so helpful with information and contacts with other corneal dystrophy patients. :) A wonderful resource. Highly recommended. :)

This is a group of people who volunteer to help those with Corneal Dystrophy's. We cover the world, 170 countries have been heard from. Join our Fuch's Friends Community for support, information and help. AND as with a re a charitable organization we always ask for donations to help others. Should you have a charitable mind set and wish information, a DVD of our 2011 Symposium with the top Cornea Surgeons speaking is available with a donation of 75.00 PLEASE HELP

The Fuchs friends group when an invaluable help to me when I first received my Dx of Fuchs Corneal Dystrophy (FCD). The provided written information and access to other web sites that helped me to understand that there are surgical techniques available to correct the disorder, and that I am not destined to be blind because of FCD. This group continues to give support and to identify corneal surgeons who perform the appropriate corneal surgeries.

I cannot say enough wonderful things about the Corneal Dystrophy Foundation and its Fuchs Friends site. Without the support and help of this website and those who run it and the other members who participate on the site I would never have had the fantastic outcome i have had after two cornea transplants plus related surgical procedures. There is no place else that I could turn to that had the information I needed to help me know when I needed surgery, how to find the doctors I needed and how to cope with the complications that followed. The people on the site had more information for me than my cornea specialist when it came to understanding what my symptoms were and where to go to find the help I needed. They gave me the knowledge of their past experiences plus the support in the present that is priceless. I cannot say enough about how wonderful this group is. There are simply no words to express my thanks to them. Through this group I gained the courage to go for the gold. To get the best doctor out there for my problem and to feel entitled to stand up for myself when I needed to. This is without doubt a superior group and the most valuable support for those with Fuchs Dystrophy. Their work is outstanding. I myself am a former support group developer and facilitator. I have over ten years of experience working with self help groups and advanced training in the administration and development of such groups. I am no longer running my program and am very happy to just be a member who has greatly benefited from the work of the Corneal Dystrophy Foundation.

The day I was diagnosed with Fuch's, after many weeks of uncertainty, I felt my world had turned upside down. I had never heard of this disease!I was going to go blind! The doctor had told me the news while sitting in the hallway! Matter of factly. With few details. I had to go to work right after that and just could not function. I turned to the internet to find more information and was lucky to discover Fuch's friends. They were an invaluable help in calming me down and getting me to understand the disease. Panic sets in when the doctor gives you bad news. In my case he might have been a great professor but not much of a humanitarian. FF put a friendly face to everything. Restored my peace of life and has been here all the way with instant replies to my questions, shared stories and access to an invaluable, current, website. I have made life long friends after meeting other members at 2 symposiums and keeping in touch through the internet. I can never thank them enough. Br in Calgary, Alberta, Canada

when I was first diagnoised with fuchs corneal dystropy I was only told that I would go blind if I did not eventually have transplants. I was scared and felt very isolated as I didnt know of any one who had this problem. I attended my first fuchs friends gathering and saw a whole bunch of happy people who had transplants and they could SEE. It took away alot of my fear and as I attended more conferences I recieved alot of education and listened to some of the top specialists in the country. The corneal dystropy foundation is very important to all of us who participate and all those yet undiagnoised. sincerly Mary Oswald

I have a rare eye disorder (Fuchs' corneal endothelial dystrophy) and found the Corneal Dystrophy Foundation and their online discussion group (Fuchs' Friends) when googling for general information. They offer a very wide and useful wealth of information about what experiencing the disease has been like for others, what surgeries are done to treat the disease, and what sorts of experience real people have had with these surgeries. The online discussion group is set up so that group members can also give each other the names of surgeons in different parts of the U.S. who specialize in this type of surgery. The online discussion group has a "moderator," which means, as far as I can tell, that someone knowledgeable reads all the posts daily, and generally helps to keep discussions sensible and well-informed. In addition, I did a search of old online discussion group posts for mention of my other eye disease--glaucoma--and found information indicating that there was an important question I was going to need to ask my own doctor. In addition to the things I have mentioned, this group also does periodic conferences, where recent advances related to treatment of the disease are discussed at laymen's level. However, I haven't attended any conferences yet.

I had Fuchs' Dystrophy and prior to joining The Corneal Dystrophy Foundation, I had no one who knew about the disease except for my ophthalmologist. After becoming a part of the group, I realized that my ophthalmologist was not current and correct about Fuchs' Dystrophy found my way to a knowledgeable cornea specialist. By then I had blisters on my cornea which complicated the outcome of the overdue DSAEK. Due to complications, I went to one of the top recommended Fuchs' cornea specialists in the US and am now Fuchs' free and my vision is improving rapidly. If I had never joined this great organization, I fear that I would have continued to trust the poor advise I was being given, I would not have been aware of the very best specialists and, I believe, my eyesight would have been significantly compromised. The education, encouragement, and knowledge I received from this group was invaluable. Such small things like how to wash your hair after surgery, were so helpful. I truly believe that anyone in the journey of Fuchs' Dystrophy would benefit greatly from being a member of The Corneal Dystrophy Foundation.

My mother was diagnosed with Corneal Dystrophy in 2004 shortly after having both her eyes operated on for cataracts. We had not fully made the connection to her mother’s diagnosis of the same condition, which was diagnosed decades earlier, until reading up on this condition on the Fuchs’ Friends website. I feel indebted to the Fuchs’ Friends website for educating me on Fuchs’ Corneal Dystrophy, providing information on what to expect from this condition and the types of surgery that were available. Mom ultimately had DSAEK surgery with a surgeon that we found on the physician locator. Prior to finding this website, I had not heard of a partial thickness cornea transplant and this website educated me on the types of surgery that were currently available, and what questions should be answered by a surgeon that would potentially be performing surgery. After researching this condition on the Fuchs’ Friends website, I felt knowledgeable enough to ask questions and understand what we were about to experience with surgery and recovery.

Before I found the Corneal Dystrophy Foundation, I was totally in the wilderness. Over the years, several ophthalmology professionals had mentioned that I had Fuchs' Corneal Dystrophy but all dismissed it as nothing to worry about. When I first heard the word "transplant" I became very alarmed. Fortunately, I found CDF where reliable information was available and joined the support group they sponsor, Fuchs' Friends. I also attended the CDF symposium at Duke University where there was opportunity to hear from cornea specialists with experience and time to interact with them personally. With the knowledge gained from the support group and the symposium, I was very comfortable going forward recently with two partial corneal transplants. The Foundation provides a valuable service to those who have this disease because it if so difficult to find reliable information and to locate a cornea specialist with expertise in treating Fuchs'. I am greatly appreciate of all who contribute their time to help others.

Several years ago I was diagnosed with Fuchs' Corneal Dystrophy. I was unable to see defination and was bothered greatly by glare, being unable to distinguish people, signs, animals and having eye strain upon reading for any length of time. In 2002, I went to the internet and found the support group, Fuchs Friends. I learned all the latest advances in treatment and where the best specialists were located. I chose to travel a long distance to see Dr Mark Terry of Portland,OR who performed a new procedure, a partial transplant,(DLEK) cataract surgery and implant in 2004. In 2007, I had the DSAEK, cataract removal and implant in the other eye. Had it not been for this group, I would never have had the knowledge and courage to make this decision to seek the best resource possible. Even though I see perfectly without glasses and no longer have Fuchs', I have chosen to stay with the group and help others. The Corneal Dystrophy Foundation and Fuchs' Friends has more accurate information on this disease than can be found anywhere. If only all candidates for corneal surgery could find this group first, there would be less cases of botched surgeries by doctors who do not recognize or understand this rare disease..

I was diagnosed with Fuchs' Corneal Dystrophy 20 years ago. For a long time I was not able to find much information regarding this illness. The Corneal Dystrophy Foundation website solved that problem. The site and the support group provide a wealth of information. Suggested questions for your doctor and explainations of the testing and disease progression are especially helpful. I was able to attend one of the bi-annual seminars where experts present the latest findings and answer questions. Eventually I made a decision to have cornea transplants in both eye and am now Fuchs' free, thanks in no small part to the Corneal Dystrophy Foundation.

I discovered the wonderful folks at the Corneal Dystrophy Foundation in 2002 at the fuchsfriends website, long before they became the foundation. I had spent the previous years in desperation as my sight continued to deteriorate from Fuchs Corneal Dystrophy with apparently no good options for a cure. I had been going to Johns Hopkins every six months for several years and each time, was told that my condition was not bad enough to do a full cornea transplant. I felt as though I was being dismissed with a pat on the back without ever being heard about how my poor vision was affecting my life. Through the fuchsfriends group and site, I learned that my condition was often under or misdiagnosed. I also learned that the women who tried to ask questions of their doctors were often put off and sometimes not even told the name of their condition. Through fuchfriends, I was able to consult with a doctor in Portland, Oregon (I live in Virginia) and was lucky enough to have him accept me as a patient for a brand new procedure at that time called DLEK (now DSEAK and other acronyms). It was through my education at the fuchsfriends message board and website that I was able to walk away from Johns Hopkins and take the plunge with Dr. Mark Terry in Portland. The surgery went perfectly and I went from legally blind to 20/50 in two days. I don't know where I would be today without all the wonderful folks at CDF who give so willingly of their time, knowledge, experience and compassion. After my first surgery, I was able to go to the annual fuchsfriends meeting in Atlanta GA. I was able to get myself on the plane and find my way to the hotel and meeting. When I had gone to Portland with my husband, I could not even read the gate numbers so this was a huge accomplishment for me. I will always be grateful to Dorothy, Signe, Bob and all the others who make this foundation work. They have helped and empowered hundreds of women just like me giving us the information and strength we needed to get our lives back after having Fuchs Dystrophy.

I have Fuchs' Endothelial Corneal Dystrophy and was looking for more information about corneal problems. The website and the people posting to the accompanying support group both have excellent information. What I like best is that the information is presented clearly, excellent explanations in terms that I understand. Research is emphasized and postings are updated in a timely manner.

When first diagnosed with Fuchs' Corneal Dystrophy, I had absolutely no information. I could only react with fear and anxiety. I began to read the CDF information and gradually settled down because I was able to gain knowledge from the literature as well as insight from people who had the same disease as I. I learned where to find top notch surgeons, how to care for my eyes, exactly what the disease was and what the symptoms were, and finally, the expected end result of a corneal transplant. The information I found here was correct, understandable, and most of all, empathetic. Finally here was a place where I could find out what a transplant entailed, where I could get one and what the recovery was like. My fears were allayed, I gained insight into this rare disease, and I was ready to make a plan for myself. In the literature I found what the usual diagnostic tests were, what the 'numbers' meant, when I should have them. Again, information was in place which brought my fear into a manageable level. With the Yahoo group supported by the CDF, Fuchs' Friends, I was able to communicate with people who had my same problems. Here was a place where I could ask my questions and receive answers from those who had gone before me. Here was a forum which helped me to understand my disease and helped me to shape my decisions as to my care and comfort of day to day living. I found my transplant surgeon on the list of doctors and read message after message of people who had used him. My experience at Fuchs' Friends and through the CDF info sent me 1200 miles to a surgeon who is internationally known for his technique, research, and abilities. Without the written word: website and informational literature, I would have had no idea where I could find good treatment. Today, after two partial cornea transplants, I have perfectly corrected vision. I can drive at night, I can survive the bright glare of the summer sun, I no longer have a corneal dystrophy. I could not have achieved this without the support of CDF.

Fuchs’ Endothelial Corneal Dystrophy gradually stole my independence, my confidence and many meaningful parts of my lifestyle. Because I found the Corneal Dystrophy Foundation and their support website, Fuchs’ Friends, my story ends well. Additionally, my experiences ultimately convinced my surgeon to adopt the endothelial keratoplasty into his practice of ophthalmology. Without the Corneal Dystrophy Foundation, these outcomes would be quite different. Since learning to read before age five, books and, by extension, the entire visual world had been at the center of everything I accomplished. All of that changed when my prescription glasses for myopia and some minor astigmatism stopped working for me. That led to a diagnosis of Fuchs’ Endothelial Corneal Dystrophy and explained many of my growing number of falls, fender bender accidents and apparent clumsiness. Though a glaucoma specialist to whom I was referred explained the disease well and left me feeling that this was not major, when the first transplant left me with astigmatism that did not recede, I realized that my world had changed. I now depended upon others for transportation. I could not read. All images were blurry, colored shapes without detail. Sunny summer days hurt my eyes. Though a Rigid Gas Permeable contact lens provided normal vision in one eye, it was often painful and did nothing to buoy vision in the yet un-operated and declining other eye. Worse, nobody offered solutions. My busy doctor preached patience, but gave few reasons. My doctor husband, a doctor but not an ophthalmologist, could give limited help. Though he queried his colleagues, Fuchs’ is a specialized area that they had little experience in treating. I was fast becoming isolated and feeling lost. At the urging of my husband and my local surgeon, I joined the Corneal Dystrophy Foundation’s support website forum, Fuchs’ Friends. As I grew fluent in the medical terminology and learned more about the disease, my relationship with my doctor changed. He began giving me more information and answering more questions. Then the Foundation announced that it was hosting a symposium featuring a discussion and question/answer session with a few of the most often referenced doctors in the field. My husband and I decided to attend. The current information, the expertise, the academic prestige shared with us and other Fuchs’ Friends at that event impressed us both. I decided that my second eye would have a less invasive surgery that was not yet widely practiced by Chicago’s ophthalmologists but was the subject of most of the discussions at Fuchs' Friends and at the Corneal Dystrophy Foundation symposium. That symposium convinced me to seek expertise from a doctor on the Corneal Dystrophy list of member-recommended surgeons. My husband helped with the research by searching the professional journals to confirm what the Foundation knew about this doctor, and he, too, was convinced. Within a few months I traveled to another city where I had an endothelial keratoplasty done by one of the pioneers of the technique. The results were optimal, and I was referred to my local surgeon for followup care. The local surgeon who had done the traditional transplant was delighted at the opportunity to observe and compare his method with the newer one in a single patient. I continued to progress rapidly, and the surgeon was convinced to learn and adopt the endothelial keratoplasty into his practice at a major Chicago medical center. The story has a happy ending. Though my eyes are still a work in progress, I have resumed my normal activities. My vision is now correctable to the ideal 20/20 on the Snellen vision test chart. Most important, I have regained my confidence and my independence. The Corneal Dystrophy Foundation enabled me to take charge of my care, my health and my life once more.

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

In the 1980's I heard one opthamologist tell aother that I had Fuchs Dystrophy. I was not told directly and thought nothing of it. Fast forward, I needed a cataract operation and asked my Doctor how many patients he had operated on with this problem. He told me thousands. It just sounded too glib to me. I subsequently looked up Fuchs on the internet... became educated and looked for another Doctor since cataract surgery needs special handling so that the cornea problem is not aggravated. Fuchs Friends brought me to Signe Maximus in Atlanta and subsequently to the physician I now see who understands and knows what he is doing. Because of this, up to now I have been spared having my cornea replaced and when the time comes to do it I am fully confident in my medical care. This would never have happened without having the Corneal Dystrophy website up and running and Fuchs Friends there for education and support.

I was diagnosed with Fuchs Corneal Dystrophy in 2002 but was told I was in the early stages and not to be concerned. But by 2004 my vision was getting worse, I had given up driving at night bevause of glare issues and halos around car lights but several Opthamologists thought this was caused by cataracts that weren't ripe enough to be removed. I continued to suffer with declining vision and my work as a nurse began to be effected, In 2006 and did a web search on Fuchs Corneal Dystrophy and found Fuchsfriends--I wrote to them, became a member and found a group of people with extensive knowledge of this disease. They offered suggestions r/t sunglasses to wear to diminish glare issues, they recommended Corneal surgeons I could contact to get a second opinion. Because of this wonderful organization I found a Corneal surgeon in Hershey Pa (6 hours from my home in Erie Pa)After meeting this surgeon, Dr Rosenwasser, I knew my eyes were in good hands, he did my cataract surgeries in 2006 and I had my first DSAEK in July, 2008 and am looking forward to having my Left DSAEK on June 8, 2010 This group has been supportive, they answer all questions, offer encouragement and give you knowledge through brochures, DVD's of past symposiums and personal stories on their website that depicts several members journies with this fickle disease. It is because of them I am on the road to being Fuch's free

Twenty-five years ago at the age of forty, my optometrist told me he detected Fuchs' disease in both of my eyes and referred me to an ophthalmologist who told me my Fuchs' disease was in the early stages but that cornea transplants might eventually be necessary. My vision gradually became worse over the years and I was referred to a cornea specialist in 2008. When I was told that it was time for me to consider surgery, I realized I needed information in order to make the important decisions ahead. One of my three sisters was diagnosed with Fuchs' and she found out about the Corneal Dystrophy Foundation and Fuchs' Friends. After hearing about the educational benefits of this nonprofit organization, I joined Fuchs' Friends and everything I read leading to my two successful DSAEK surgeries this year was invaluable. Through this organization, I was fortunate to find an excellent, skilled surgeon, Dr. Alan Kozarsky, located in Atlanta, GA. The Corneal Dystrophy Foundation's symposium videos were helpful to me as well. I am thankful for The Corneal Dystrophy Foundation and the intelligent individuals associated therewith who help and inspire everyone on their pathway to better vision.

I, like so many other Fuchsfriend clients, found my way to this board because of cataract surgery done my an ophthalmologist who knew nothing of this genetic disease. In August of 2007,two months after cataract surgery, I was still seeing "through waxed paper" and asked to be sent to Houston to a specialist. In Houston I was diagnosed with Fuchs' Corneal Dystrophy and was told I would need a cornea transplant in order to see and stop the blistering. Panic swept over me. I couldn't think - what questions should I ask? Nothing came to me. I called a friend who worked in the medical complex and told her what was happening. We met for lunch and she handed me a paper with the Fuchs' Friends website address. As soon as I returned to Midland I contacted them. They changed my life! So knowledgeable and compassionate. I learned the questions to ask and the names of Drs. in Houston who could help me. I was able to speak with patients of these Drs. and through them chose Dr. Goosey. I have now had two DSAEKs and can see again! No more blisters, no walking off curbs, can drive at night again, can play with my grandchildren! This organization picked me up, dusted me off and set me on the path to complete healing! There are many other people out there that need their help but Fuchs' Friends needs funding to be able to reach out to those who need them the most. The volunteer staff are there to help 24/7 and how they keep up with it, I know not. I still watch the message board everyday and will "pay it forward" whenever I can.

The Fuchsfriends website was my life-line for several years. A week after my diagnosis of Fuchs'endothelial dystrophy I joined this support group, and was immediately invited to attend a symposium the very next day. I was living in Atlanta, Georgia at the time, and it turned out that the symposium was only a mile away from where I lived. I thought that it was very nice of them to allow me to attend on such short notice. I met the founders of the group, and learned a great deal. As my vision continued to worsen, I could always count on encouragement and information from Fuchsfriends. It was a member who told me about special glasses that I could put on my bifocals, which made it possible for me to continue to read music. I was consoled by other musicians in the group, who shared their experiences with me. After having a very unhappy experience with a local corneal specialist, I explained what happened to the group, and was encouraged to get a second opinion from Dr. Price in Indianapolis. Thanks to all the wonderful information that the group supplies, which included a DVD of a symposium that I could not attend. I already knew about the top doctors in this field, including Dr. Price. I made an appointment, and during the two month wait I corresponded with some of his patients who were members of this group so that I would know exactly what to expect during my appointment. I liked Dr. Price, and had very good outcomes from my transplant (DSEK) surgeries in July, 2008, and in April, 2009. If I had not found this support group I would have had a much more difficult road. Because of their information, help, and nurturing, I was able to get my vision back sooner rather than later, and am now back to the work that I could no longer do when I had the disease. Debbie Zufall

I have been a member for several years to the fuchs friends website. Diagnosed with corneal macular dystrophy, an autosonomal recessive trait, there are not many of us in existence. I am not legally blind but have numerous issues stemming from the condition. A few times a year I visit a corneal specialist where I can try to squish several months of concerns and issues into a thirty minute appointment. The fuchs friends site is a support place, where anytime of day or night, when things are overwhelming, I can fit in. I can vent and ask for help and just belong somewhere. A group of people who share similar experiences with the many issues tied to being "almost blind" yet still coping with everyday life. I hope that funding can be provided to allow this group to grow in hopes to reach out and empower others with corneal issues to not give up- life is still ok, even when you can't see as clearly as others. Thanks fuchs friends and all those who support it.

I was told I had fuch's dystrophy when I was in my early 50s. I was told what I had and that Other than putting Muro 128 in my eyes when things got blurry, there was really nothing to do until my vision declined to the point I was leaglly blind, than they could do a corneal transplant. I was very scared, contacted my family to see if ayone else had ever had this. No one had so I ignored it as much as possible, got new glasses often and addapted to the fog, distortion of lights and told myself it was age, and everyone saw like that. After 13 years I no longer drove at night, or in the rain, I had moved to Montana and the driness of the climate helped. Than because of family obglations I moved to Minnesota, and had a computer to be used, and use it I did. Looked up Fuchs' Dystrophy and there it was Fuchs' dystrophy Foundation, and a whole new world opened up, I was not alone, I didn't have to wait for total dependance upon others. What I was seeing was not age, I was 63, I made an appointment with an optometrist, I told her I had Fuchs' Dystrophy, she looked in my eyes and said Oh my, you certainly do. Low and behold not everyone saw starbursts around lights, nor did other people my age see through fog in the morning or if it was damp out see throug fog all day. The glare and pain of being in the sunlight was not a problem for them, their eyes did not burn and sting most of the time, they didn't fall as often over a shadow on the sidewalk, or miss steps, there was light at the end of a very bleek tunnel. She sent me to a corneal surgeon, Dr. Daniel Skorich, he said your ready now for a transplant, call me when you are ready. You see, I was still scared, I needed to take this all in, I needed to find out more about the surgery. Back to the Fuchs' Foundation, and from there to Fuchs' Freinds, to read and find other people with this to hear their stories, and ask questions, to mull this all over in my mind. To let the fear go as I read there accounts of Fuchs'. This spring I went for a mn. drivers license, couldn't see the letters, try this other machine they said it's brighter, when I said Oh yes thats an O R L..They said those are numbers. April 7, 2010. I hae a triple, DSAEK, cat, & IOL. I can read without a magnifying glass now...I had been using one for about 4 years. Only one eye hurts when it rains, and that too will be fixed. I can truthfully say the Fuchs' Foundation was life changing for me.

Fuch's Friends is the best source of information of its kind anywhere. The founders of Fuch's Friends have provided not only significant technical expertise but a very caring outreach to us sufferers of this otherwise sinister genetic disease of the eye. I cannot commend FF highly enough!

When I was told that I had Fuchs' Corneal Dystrophy, I had never heard of the condition. Fortunately, I found this organization through the internet. The Corneal Foundation provides basic, easy to understand information about Fuchs', a database of specialists whom members have found to be helpful, a list of questions to ask your doctor, and other valuable resources. The Foundation has sponsored several symposiums with the top specialists in Fuchs' participating. The proceedings are available on DVDs for a nominal contribution for those of us who could not attend. In addition, the Fuchs' Friends message board allow you to ask questions and get answers from people who have experienced the same problems. Some of those who respond are, like me, simply patients who can relate their own experiences, but others are more than patients - they have acquired a depth of knowledge that is amazing. This has been a wonderful resource for information and support. Among other things, they helped me to realize that the corneal transplant which Fuchs' patients often need is not nearly as difficult as I expected. My journey from diagnosis to Fuchs' Free with two transplants has been much less difficult that it would have been otherwise.

I'm from Bangkok ,Thailand. and 3years ago at age 38, my cornea suddenly went opaque and my doctor said I needed transplant, but I still have to work and use eyes a lot. It is very very tough tough period, but I found this group on the internet. and their kind advise and experience has help me through , now I underwent the transplant with much much better vision Thanks a lot to fuchs association. WIthout their advise , I don't know I would have made it until now.

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.

This charitable organization helped save my vision. I was suffering from seriously declining vision and, at the age of sixty with a very demanding job, I did not know what to do when I was diagnosed with Fuchs Corneal Dystrophy. Even though I lived in Manhattan and had access to the best eye doctors, few eye doctors I consulted were knowledgable about this disease which can be corrected by a corneal transplant. I found Fuchs Friends when searching the Internet for information about the disease. Because of the helpful information posted by the group I found an excellent surgeon and today my vision is 20/20 corrected. I can navigate the world, read, and use the computer without glasses. The Board of Directors are hands on and devoted a great deal of time to the Foundation. I cannot think of a single negative thing to say about this organization.

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.

The Corneal Dystrophy Foundation was established several years after I joined the support group, Fuchs Friends. The foundation has formalized the efforts that go into providing accurate information for people with this disease and has brought patients and doctors together so that doctors feel like they are partnering with their patients and the foundation. Through the efforts of the foundation, patients are educated about advances in treatment and helped to seek doctors who can provide advanced treatments. The result is that patients today can recover from a cornea transplant in 2-3 months versus 12-18 months for previous treatment methods. It has been a revolution.

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 learned the name of my corneal condition from my sister who has the same Fuchs' Dystrophy. My eye Dr. had never told me of my Fuch'. In searching the internet I discovered the Corneal Dystrophy Foundation and their support group with daily informative digests from others with Fuch'. It has been an invaluable source of information about the condition and where to go for help when needed. I attended the Seminar at Duke Eye Institute last May. Maryan White

I was diagnosed with Fuchs Distrophy (a genetic disease of the cornea) 4 years ago. When my doctor told me that unless I received a cornea implant my sight would become progressivley worse to the point of near blindness and that I would suffer painful blisters on my eyes. The thought of having surgery done on my eyes was not an agreeable one. I have been a computer buff for many years and decided to research the disease via the internet. I typed in Fuchs Distrophy and was led to a site that others with my ailment had started. I was able to hear of other's experiences, things to ask my doctor and what results to expect after surgery. I was able to communicate with folks who calmed my fears and encouraged me to go forward with the surgery. I DID!!.I had cornea transplants on both eyes and my vision is better now than it was 25 years ago.

I first used the Foundation's US website when it was the only available source of information from sufferers of this unusual condition about their symptoms and how they managed them. This was invaluable to me in finding the right questions to ask of specialists, and to find the right specialist. I have thereby been able to manage my condition for several years without it causing a major change to how I live my life. Advice about eyedrops (to limit my glare sensitivity) and choosing the correct shade of spectacles has been particularly invaluable. I now live in the UK and a Fuchs' group has been formed here too. But I continue to be a frequent visitor to the US site as well which continues to provide a rich source of information. Paul Garwood

My Optometrist asked me if I had ever been told I had Fuchs Corneal Dystrophy. I had not, but my mother does. He said he would be able to help me, and proceeded to fit me with contacts. Through my exposure to the Fuchs group I became educated about the eye disease, recommendations for Doctors with expertise and the progression and symptoms. I also found out that contact lenses are not to be used by people with Fuchs. The education and the contact with others with the same problem has been very helpful and comforting. The unknown creates anxiety. The known creates understanding and enlightenment.

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.