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.
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.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
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?