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!
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.
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.
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.
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. Excellent information. Very helpful to me personally and, I am sure, to many others. I will continue to support financially even though I no longer read the emails daily because of my busy schedule.
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.