The Corneal Dystrophy Foundation
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They have been so helpful with information and contacts with other corneal dystrophy patients. :) A wonderful resource. Highly recommended. :)
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How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Quite well
When was your last experience with this nonprofit?
2013
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.
The Great!
I've personally experienced the results of this organization in...
My decisions for eye surgeries were based on the dissemination of their knowledge and the other sources provided by them, including seminars with the leading surgeons in the corneal dystrophy field, based on peer-reviewed medical journal articles and studies. This progressive disease deprived me of the ability to see street signs at night, read the daily newspaper under excellent lighting, and generally caused a severe deterioration of the quality of my life.
Ways to make it better...
If I had to make changes to this organization, I would...
Enlarge its funding base so that the knowledge the group dispenses can reach more affected individuals around the world.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
How did you find this group?
Web searches on line.
What, if any, change in your life has this group encouraged?
It helped restore my vision with a newer medical procedure and provided essential information so my surgeries would be covered by my HMO. It is difficult to appreciate fully this organization's contribution unless you have had corneal dystrophy with your eyesight literally slipping away in a matter of months.
When was your last experience with this nonprofit?
2011
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 Great!
I've personally experienced the results of this organization in...
Because of this group I found the best information about what I needed and where to go to get the best help there is. They gave good help with no axe to grind.
Ways to make it better...
If I had to make changes to this organization, I would...
I know they don't allow what they call doctor bashing. But some way that we could let others know of bad experiences in a log form for future people. There are some doctors who are not very good and people be should be warned to avoid them.
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What I've enjoyed the most about my experience with this nonprofit is...
Finding the help I needed at a time when I was in great distress
The kinds of staff and volunteers that I met were...
Kind
If this organization had 10 million bucks, it could...
get a campaign so that the information that is on this website could be found in public libraries and doctors offices world wide. It is an organization that has a world wide base.
Ways to make it better...
At times an off screen facilitator was very harsh and I did not appreciate the unkind words. They were very hurtful and totally unnecessary.
In my opinion, the biggest challenges facing this organization are...
Getting people to know about its existence including doctors. The people on this site know more about Fuchs than most doctors.
One thing I'd also say is that...
I am tremendously thankful to the unpaid all volunteer staff who work so hard to help others with their problems with this terrible disease. They are gems. Even the one who had some too harsh words to say to me.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
By helping me find the information to make the selection of which doctor to use and what kind of procedure to have, they help me get back my eyesight which I was loosing rapidly. The information given here is invaluable for people who have Fuchs.
Ways to make it better...
If I had to make changes to this organization, I would...
Can't think of any right now.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
I got help when I seriously needed it in a place that was safe
The kinds of staff and volunteers that I met were...
Helpful
If this organization had 10 million bucks, it could...
Do help people around the world learn more about their disease and take charge of it.
Ways to make it better...
The Yahoo interface we use was easier to work with.
In my opinion, the biggest challenges facing this organization are...
It needs money to provide more widespread knowledge of its information. People need to know it exists. It really is a major service to people with Fuchs.
One thing I'd also say is that...
I am eternally grateful to this organization. I would never have had the access to critical information or the type of support I needed without this group. They have been my lifeline to getting the knowledge needed to treat this illness.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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
The Great!
I've personally experienced the results of this organization in...
I read the digests on a daily basis from people reaching out to people for support and information.
Ways to make it better...
If I had to make changes to this organization, I would...
none
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
going to the conferences..meeting others with Fuchs.
The kinds of staff and volunteers that I met were...
very professional, very helpful
If this organization had 10 million bucks, it could...
help people who do not have the funds to get the help they need.
Ways to make it better...
I liked when we use to take a picture of attendees holding up fingers for how many transplants.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
(I covered this in "review," above.)
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What I've enjoyed the most about my experience with this nonprofit is...
I can both find information and interact online with others whenever I want to (and the information is sound).
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
The most important results for me was the knowledge and encouragement from others who have this rare disease. Reading their stories and following their journey made my journey much easier.
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What I've enjoyed the most about my experience with this nonprofit is...
Education, information and sharing about my rare eye disease.
If this organization had 10 million bucks, it could...
1) Help to establish ways to provide continuing information to all eye care professionals about Fuchs' Dystrophy. 2) Find a way to reach out to the many suffering from Fuchs' Dystrophy and aren't aware that help is available.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
My mother was less scared of going completely blind after having been provided information from this website.
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How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
This organization helped me find my way as I made a decision on the best treatment.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
my own life. See above comments.
Ways to make it better...
If I had to make changes to this organization, I would...
Get them more funding and publicity.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The caring combined with expert knowledge that really helps to give members their lives back after fighting Fuchs Dystrophy.
The kinds of staff and volunteers that I met were...
So informed and connected with professionals and doctors who would help their members. Caring, compassionate, smart and funny all at the same time.
If this organization had 10 million bucks, it could...
Get their message out even more and hopefully give themselves some salaries for all the time and effort they have selflessly volunteered. And perhaps fund surgeries for people who cannot have the surgery due to financial situations.
Ways to make it better...
If I had discovered them sooner!
In my opinion, the biggest challenges facing this organization are...
Is getting the funds to keep everything going.
One thing I'd also say is that...
THANKS!
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
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.
The Great!
I've personally experienced the results of this organization in...
--doctor choice --sharing of information of a rare disease --transfer of information with printed literature --anecdotal records of previous patients --patient recommendations for pre and post-transplant surgery
Ways to make it better...
If I had to make changes to this organization, I would...
make it available to even more people. I feel they are doing an outstanding job in educating those of us with Fuchs' Corneal Dystrophy.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
gaining knowledge about an heriditary condition which may impact my family; gaining knowledge which affects me personally; Learning how many others are going through the same experiences.
The kinds of staff and volunteers that I met were...
Outstanding, giving of their time and talents selflessly. They are wonderful!
If this organization had 10 million bucks, it could...
do even more good...more people, more places. It could train doctors to do a better job at diagnosing Fuchs' Corneal Dystrophy. ...and it could have a national meeting annually!
Ways to make it better...
I'd found you sooner!
In my opinion, the biggest challenges facing this organization are...
Financial support for general meetings/symposiums for the entire country.
One thing I'd also say is that...
THANK YOU!
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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