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.
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.
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.
I learned much about my inherited eye problem and found a great Doctor where my Winter home is near Ft. Myers, Florida. I have had one surgery so far and will need three more in years to come. I have gone to one meeting of this foundation at Duke University in North Carolina and met some wonderful people. I follow their e-mailed blogs and use their site for further information on Doctors and such.
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.
They have so much knowledge and have helped so many in ways.
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
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.
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
In June 2009 I was accessed for Laser Vision to improve my sight and no longer have the need to wear glasses. At the end of the appointment I was told I had Fuchs's Dystrophy and that I was not a suitable candidate for Laser Surgery. I was very disappointed and also told by the Dr who was one of the 3 main surgeons there, regarding Fuch's Dystrophy to 'not look it up on the internet when I got home as it will only spook you'. Of course I went home and looked it up straight away oly to find myself at Fuch's Friends and saw theyhad a group email. Everything I know about Fuchs I learnt from their website and mainly through the experiences of the other emailers. Over time and with a bit of denial from myself I decided to act on given advise and find myself a good specialist long before I would possibly need them. At my appointments with the specialist I have had no need to ask many questions as they have spoken about any concerns or facts I needed to know during the consultation. Only due to the fact of being educated via Fuchs' Friends was I able to have a two way converstation with my specialist and know exactly what he was talking about so that there were no surprises or worrying thoughts for me to endure, thereby maximising my consultation. Because all of the fear was removed from what I had read at Fuchs' Friends re what would happen in the future, the kinds of surgical procedures to expect, the ups and downs of recovery I found that when it was suggested I have a cataract removed I welcomed the opportunity with welcome arms.I had all and any of my questions regarding that procedure answered at Fuchs' Friends. Since then I have been hopefully of inspiration to others through sharing my experiences with fellow Fuchs Friends. This site has been mine and many others, saviour. I aim to contact the media where I live and get awareness of Fuchs Dystrophy so that no one else gets fobbed of like I was. I have been a hairdresser for 45 years with my own salon and have NEVER heard of this disease, before and with my clientele and their illnesses over the years I have heard of most things. I would support any help that Fuchs Friends might be in need of to continue their more than invaluable website. If not for the encouragement, support and help from Fuchs Friends I would probably still be in denial wearing glasses. Now I no longer wear glasses and have much improved vision. As for the future, well I know the Fuchs can start to deteriorate at any moment and if and when it does I have the knowledge and no fear to face it head on. Regards Sue Alexander Sydney Australia
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!
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.
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.