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.
I have been a member since 2003. When I realized I needed to have DSEK transplants, read everything I could find, and learned so much from this site.. I wrote abut my surgery with Dr. Price when it was fairly new and hoped i could encourage others to utilize his services... He is now one of the EXPERTS in the field.. My surgeries took place in 2004 and 2005 and am happy to report that my eyesight is great and am finally "fuchs free"... I know so many others who have gained so much information from this site and highly recommend it to others with this disease.. There is a cure available!
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.
This is a wonderful volunteer organization which spreads facts and information about a rather rare disease whose treatment is constantly advancing. To keep up to date, and to face the onset of Fuchs' Dystrophy, those who are suddenly diagnosed have a place to receive individual attention while getting the most current information on treatments. So many physicians seem to be "behind the times" and the CDF is always at the cutting edge of accurate info.
Without a doubt, this organization provides much need factual and medical journal-based education and information about Fuchs Dystrophy, a rather rare disorder causing dystrophy of the cornea.
This non-profit charity operates on a shoestring, with no paid staff, but a strong group of long-time volunteers who have no other motives but to help confused and anxious patients learn more after their initial diagnoses of Fuchs Dystrophy and then help them through each phase of diagnosis and treatment.
When I was first diagnosed in the early 2000s, I immediately sought accurate info and was rewarded with the compassionate and honest info they provide.
As I neared my corneal surgey, I kept track of technology and efficacy-based advances in the state of the art. I received the best care with the most appropriate surgery based on the information they provided me and other members through the Foundation's web-based outreach.
Anyone with corneal dystrophy should contact the Foundation for the help it will provide in a sea of misinformation, many times caused by rapid medical technology changes. Thousands of corneal dystrophy patients have avoided highly traumatic and difficult penetrating keratoplasty surgery (complete corneal transplants) and instead received the restoration of good vision within days, not months or years, through selective and limited transplantation surgery performed by over a hundred specialized ophthalmologists.
Only this volunteer organization is dedicated to providing up-to-date medical facts, based on peer-reviewed journal information, for world-wide patients to make their own informed decisions about corneal dystrophy.
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.