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October 31, 2013
3 people found this review helpful

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October 31, 2013
3 people found this review helpful

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.

Ways to make it better...

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

They do a great job.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 31, 2013
2 people found this review helpful

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October 31, 2013
2 people found this review helpful

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

Ways to make it better...

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

not change a thing.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 31, 2013
3 people found this review helpful

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October 31, 2013
3 people found this review helpful

I am 31 years old and was diagnosed with Fuch's Dystrophy about 4 years ago. It was a shocking diagnosis to both my doctor and me. I was told at 27 years old that I will lose my quality of life because my vision will go, and that I will then need a corneal transplant - but no one can tell me when because I'm so young. I had a lot of emotions and my dad got on the computer to do research which led him to this group. To say they have been helpful is an understatement. I am no longer scared about what the future holds for my eyes... and any time I have any questions about a new symptom or anything - the group is right there to help me through.

More feedback...

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

When was your last experience with this nonprofit?

2013

October 31, 2013
2 people found this review helpful

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October 31, 2013
2 people found this review helpful

I am a Canadian and found this site most helpful as I had little information and bad guidance from my local ophthalmologist. I've learned so much about this disease -Fuchs- that I am now able to go ahead with confidence to their recommended surgeon in Toronto. If all a member does is just read every email posted it is an extremely helpful, worthwhile 10 minutes a day .

Ways to make it better...

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

no changes

More feedback...

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

When was your last experience with this nonprofit?

2013

October 31, 2013
2 people found this review helpful

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October 31, 2013
2 people found this review helpful

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.

More feedback...

Would you volunteer for this group again?

Unsure

When was your last experience with this nonprofit?

2013

October 31, 2013
2 people found this review helpful

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October 31, 2013
2 people found this review helpful

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!

More feedback...

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

When was your last experience with this nonprofit?

2013

October 31, 2013
1 person found this review helpful

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October 31, 2013
1 person found this review helpful

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.

Ways to make it better...

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

continue to exert an effort to make all feel welcome. I wish more doctors possessed more of the information available on this site. In my experience, doctors are wary when their patients share any knowledge they found online. There should be more awareness of the Foundation's credibility.

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When was your last experience with this nonprofit?

2012

October 31, 2013
1 person found this review helpful

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1 previous review
June 6, 2011

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 n... more

October 31, 2013
1 person found this review helpful

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.

Ways to make it better...

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

Find more people who need the info, and get more contributions to do same.

More feedback...

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

When was your last experience with this nonprofit?

2013

June 6, 2011
1 person found this review helpful

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.

More feedback...

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

October 31, 2013
1 person found this review helpful

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October 31, 2013
1 person found this review helpful

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

More feedback...

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

When was your last experience with this nonprofit?

2013

October 26, 2013
2 people found this review helpful

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October 26, 2013
2 people found this review helpful

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.

More feedback...

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

When was your last experience with this nonprofit?

2013

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