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.
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.
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 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.
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.
Fuchs' Friends is an online outreach Yahoo group that The Corneal Dystrophy Foundation (CDF) has operated for the past decade. Many of the Fuchs' Friends don't realize that the group is part of the CDF and so the often use Fuch's Friends when talking about the foundation
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.
Thank you for the wonderful review. Please feel free to privately email with with any complaints about moderators or other staff.
I was told I would need a partial cornea transplant. I was terrified. I knew nothing about how to select a surgeon to do this nor what were the symptoms that indicated the surgery was necessary. This group explained to me about the symptoms and what they indicated. It also provided information as to how to find a good doctor and the actual names of doctors that did the procedure so I could check them out and decide who would be best for me. It also provides help and support when I have had problems come up associated with the transplant. You really can't find a better group than this one for helping people deal with the process of corneal transplant.
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..
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.