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May 26, 2010
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May 26, 2010
1 person found this review helpful

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

May 26, 2010
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May 26, 2010
1 person found this review helpful

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

May 25, 2010
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May 25, 2010
1 person found this review helpful

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 Great!

I've personally experienced the results of this organization in...

numerous incidences where people find what they need to know in order to make informed decisions about their health care.

Ways to make it better...

If I had to make changes to this organization, I would...

find a way to make it more accessible to those who need it and to be able to distribute more information to potential donors, people with Fuchs' and to doctors who need training in recognizing and treating this disease.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the great people I have met, the knowledge I have gained, and the people we have helped. The symposiums, all of which I have attended.

The kinds of staff and volunteers that I met were...

great, caring people.

If this organization had 10 million bucks, it could...

educate a lot more doctors, donors and potential patients.

Ways to make it better...

I had more time to devote.

In my opinion, the biggest challenges facing this organization are...

lack of funds to do the work that needs to be done. More Volunteers to share the load. Creating better, more informative symposiums each year.

One thing I'd also say is that...

I appreciate all the hard work that the volunteers and board members do to make this Foundation the best I have seen.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

May 24, 2010
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May 24, 2010
1 person found this review helpful

I was diagnosed with Fuchs' Corneal Dystrophy 20 years ago. For a long time I was not able to find much information regarding this illness. The Corneal Dystrophy Foundation website solved that problem. The site and the support group provide a wealth of information. Suggested questions for your doctor and explainations of the testing and disease progression are especially helpful. I was able to attend one of the bi-annual seminars where experts present the latest findings and answer questions. Eventually I made a decision to have cornea transplants in both eye and am now Fuchs' free, thanks in no small part to the Corneal Dystrophy Foundation.

The Great!

I've personally experienced the results of this organization in...

dealing with the disease over the last 5 years and coming to the decision in 2009 to undergo cornea transplants.

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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

May 24, 2010
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May 24, 2010
1 person found this review helpful

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

May 24, 2010
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May 24, 2010
1 person found this review helpful

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 Great!

I've personally experienced the results of this organization in...

in my understanding of my disease and in the medical options available to me. I am a better patient from the timely information posted and will be able to face my transplant with courage and a positive attitude rather than with fear and trembling.

Ways to make it better...

If I had to make changes to this organization, I would...

I'm not sure I would make any changes. I suppose it is unreasonable to expect a busy physician to be available to chat or to answer questions in real time via the website. But perhaps a retired ophthalmologist could be employed to answer user's questions.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The timely information and access to research in corneal dystrophies.

The kinds of staff and volunteers that I met were...

I have interfaced only with the website.

If this organization had 10 million bucks, it could...

Provide funding for research into corneal diseases.

Ways to make it better...

Not sure; it was an excellent experience.

In my opinion, the biggest challenges facing this organization are...

I am not informed of the challenges of this organizaiton.

One thing I'd also say is that...

Since I suffer from a corneal dystrophy, I feel that I am a much more informed patient because of contact with the Corneal Dystrophy Foundation. I will face my transplant with confidence and courage rather than with fear and trembling. ccccccccccccccccccc

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

May 23, 2010
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May 23, 2010
1 person found this review helpful

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

May 23, 2010
1 person found this review helpful

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May 23, 2010
1 person found this review helpful

Fuchs’ Endothelial Corneal Dystrophy gradually stole my independence, my confidence and many meaningful parts of my lifestyle. Because I found the Corneal Dystrophy Foundation and their support website, Fuchs’ Friends, my story ends well. Additionally, my experiences ultimately convinced my surgeon to adopt the endothelial keratoplasty into his practice of ophthalmology. Without the Corneal Dystrophy Foundation, these outcomes would be quite different. Since learning to read before age five, books and, by extension, the entire visual world had been at the center of everything I accomplished. All of that changed when my prescription glasses for myopia and some minor astigmatism stopped working for me. That led to a diagnosis of Fuchs’ Endothelial Corneal Dystrophy and explained many of my growing number of falls, fender bender accidents and apparent clumsiness. Though a glaucoma specialist to whom I was referred explained the disease well and left me feeling that this was not major, when the first transplant left me with astigmatism that did not recede, I realized that my world had changed. I now depended upon others for transportation. I could not read. All images were blurry, colored shapes without detail. Sunny summer days hurt my eyes. Though a Rigid Gas Permeable contact lens provided normal vision in one eye, it was often painful and did nothing to buoy vision in the yet un-operated and declining other eye. Worse, nobody offered solutions. My busy doctor preached patience, but gave few reasons. My doctor husband, a doctor but not an ophthalmologist, could give limited help. Though he queried his colleagues, Fuchs’ is a specialized area that they had little experience in treating. I was fast becoming isolated and feeling lost. At the urging of my husband and my local surgeon, I joined the Corneal Dystrophy Foundation’s support website forum, Fuchs’ Friends. As I grew fluent in the medical terminology and learned more about the disease, my relationship with my doctor changed. He began giving me more information and answering more questions. Then the Foundation announced that it was hosting a symposium featuring a discussion and question/answer session with a few of the most often referenced doctors in the field. My husband and I decided to attend. The current information, the expertise, the academic prestige shared with us and other Fuchs’ Friends at that event impressed us both. I decided that my second eye would have a less invasive surgery that was not yet widely practiced by Chicago’s ophthalmologists but was the subject of most of the discussions at Fuchs' Friends and at the Corneal Dystrophy Foundation symposium. That symposium convinced me to seek expertise from a doctor on the Corneal Dystrophy list of member-recommended surgeons. My husband helped with the research by searching the professional journals to confirm what the Foundation knew about this doctor, and he, too, was convinced. Within a few months I traveled to another city where I had an endothelial keratoplasty done by one of the pioneers of the technique. The results were optimal, and I was referred to my local surgeon for followup care. The local surgeon who had done the traditional transplant was delighted at the opportunity to observe and compare his method with the newer one in a single patient. I continued to progress rapidly, and the surgeon was convinced to learn and adopt the endothelial keratoplasty into his practice at a major Chicago medical center. The story has a happy ending. Though my eyes are still a work in progress, I have resumed my normal activities. My vision is now correctable to the ideal 20/20 on the Snellen vision test chart. Most important, I have regained my confidence and my independence. The Corneal Dystrophy Foundation enabled me to take charge of my care, my health and my life once more.

The Great!

I've personally experienced the results of this organization in...

I had Fuchs' Dystrophy and cornea transplants for it. The recovery is a process. The organization has helped me to cope with small setbacks. I found an expert surgeon through the organization and have 20/20 vision as a result.

Ways to make it better...

If I had to make changes to this organization, I would...

Facilitate greater public outreach familiarizing the public with corneal dystrophies to equal that of their familiarity with glaucoma or cataracts.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the depth and breadth of the medically accurate information available.

The kinds of staff and volunteers that I met were...

dedicated to helping others and knowledgeable.

If this organization had 10 million bucks, it could...

help needy Fuchs' sufferers to get the needed surgery and give scholarships for research and training of more Fuchs' specialists.

Ways to make it better...

I had discovered it sooner.

In my opinion, the biggest challenges facing this organization are...

the need for ever greater outreach and financing to do that.

One thing I'd also say is that...

the Corneal Dystrophy and Fuchs' Friends have probably had a significant role in advancing the adoption of the latest standard of care surgeries by ophthalmologists throughout the U. S. by at least three to five years.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

May 23, 2010
1 person found this review helpful

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May 23, 2010
1 person found this review helpful

I thought I was knowledgeable about the disease that was causing my failing eyesight and ultimately encouraged my early retirement. Since it is an inherited disease, I had observed my father's experience and assumed his recommended physician's treatment plan was state of the art. This treatment plan consisted of successive exhortations to be patient and "modify my lifestyle,' ie, give up doing the things that gave my life purpose and meaning. Naturally, I became depressed. Through the wise counsel of Fuchs' Friends, I discovered that, partly through the support of the Corneal Dystrophy Foundation, the surgery for Fuchs' Dystrophy had been greatly improved, and I was already a candidate for the new less invasive procedure. No more waiting! Then the knowledgeable members of Fuchs' Friends coached me through the process of finding a capable surgeon, the awkward transition from my old surgeon, and every step of the surgery and recovery, including a few complications, which would have been distressing, without the reassurance of those who'd experienced them. Today I have excellent vision in one eye and am awaiting my second surgery with enthusiasm. I know that I will end driving, reading, and writing again and restored to a useful and contented member of society.

The Great!

I've personally experienced the results of this organization in...

the restoration of my sight, return of self-confidence and zest for living, and a resumption of the round of activities that make me a useful member of society.

Ways to make it better...

If I had to make changes to this organization, I would...

Increase its visibility to those who still suffer needlessly with the impaired vision caused by Fuchs' Dystrophy.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the caring and generous sharing exhibited by members.

The kinds of staff and volunteers that I met were...

uniformly generous, kind, and well-informed.

If this organization had 10 million bucks, it could...

fund more research aimed at prevention, rather than curing after the fact.

Ways to make it better...

I had found this organization sooner.

In my opinion, the biggest challenges facing this organization are...

getting through the masses of information available on the internet about this disease - not all of it correct or up to date - to get its hopeful message out to those who need it.

One thing I'd also say is that...

No question is too minor, niggling, or "stupid" to receive an informative caring answer from a member of Fuchs' Friends.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

May 23, 2010
1 person found this review helpful

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May 23, 2010
1 person found this review helpful

In the 1980's I heard one opthamologist tell aother that I had Fuchs Dystrophy. I was not told directly and thought nothing of it. Fast forward, I needed a cataract operation and asked my Doctor how many patients he had operated on with this problem. He told me thousands. It just sounded too glib to me. I subsequently looked up Fuchs on the internet... became educated and looked for another Doctor since cataract surgery needs special handling so that the cornea problem is not aggravated. Fuchs Friends brought me to Signe Maximus in Atlanta and subsequently to the physician I now see who understands and knows what he is doing. Because of this, up to now I have been spared having my cornea replaced and when the time comes to do it I am fully confident in my medical care. This would never have happened without having the Corneal Dystrophy website up and running and Fuchs Friends there for education and support.

The Great!

I've personally experienced the results of this organization in...

Primarily in keeping up to date with the latest medical break-throughs and through our "talk list" being kept aware of what the progression of this disease is so that I can alert my Doctor to what is happening to me.

Ways to make it better...

If I had to make changes to this organization, I would...

I have a friend in NYC whose Dr. told him he was going blind from Fuchs Dystrophy. My knowledge helped him. Doctors and the general public must be better educated. Corneal Dystrophy Found. can do this but it needs the financial means to do so.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The willingness of pphysicians to come to our seminars and to directly share their work with us.

The kinds of staff and volunteers that I met were...

Dedicated and awesome...considerint that they are all volunteers

If this organization had 10 million bucks, it could...

Educate physicians in diagnosing and educating their patients. Teaching more physicians techniques in operating. Bringing it to attention of the general public.

Ways to make it better...

My oriiginal Doctor had cued me into the problem so that I could keep track of it better.

In my opinion, the biggest challenges facing this organization are...

Lack of funds to spread awareness and what can be done to resolve the problem at the proper time.

One thing I'd also say is that...

Kudos to the people who keeping pushing to make the Foundation better

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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