We found this on the Great Non-Profits website and wanted to share it with you. We encourage you to share your story on their site.
I found out in 2012 that I have Fuchs Dystrophy. The doctor at the time told me that it was nothing serious and that I’d probably only need any kind of treatment for it once I was in my 70s. Fast forward about 7 years; I am barely in my fifties and starting to have problems with my vision. When I had an eye test to renew my driver’s license, I failed it, even with my spectacles. I went back to my optometrist and she prescribed two new sets, one for driving and one for reading. I failed my eye test at the licensing authority again. After getting new spectacles for a third time, the optometrist mentioned that my Fuchs may be the cause of my changing eyesight, and she referred me to an ophthalmologist.
The first ophthalmologist ran a battery of tests, prescribed eyedrops and told me to return in six months, as my Fuchs was not bad enough yet to have any form of surgery. Over the next two years, I saw him six times. Every time he prescribed a different eye drop and at one point some mineral supplements. By this time I was not able to drive at all anymore and at times my eyesight was so bad that I could not cross a street safely on my own. I had five pairs of spectacles but with my eyesight changing during the day, none of them worked for me.
After two years, when I was hopeful that the ophthalmologist would do the cornea transplant we discussed before, he referred me to a colleague of his, stating that he does not specialize in cornea transplants. It took me three months to get an appointment with his colleague. After another battery of tests with her, she said that my eyes were in terrible condition and that I wouldn’t be eligible for transplant surgery for at least another two years. I had Fuchs Dystrophy, astigmatism, severe dry eyes and allergies. She prescribed four different eye drops that I had to use a total of fourteen times a day. My life revolved around eyedrops. I knew that I would be blind within a few months, as I already found it difficult to work and impossible to drive, sew, read, etc.
It was at this point that I came across the Fuchs Dystrophy Foundation’s Facebook page. I needed support and advice. And this is exactly what I got.
I wrote an email to the Fuchs Friends group, explaining my situation. Within hours I received resources; from a list of Fuchs specialists to what questions to ask when deciding on an ophthalmologist. I never considered that I had a choice, that I could vet doctors and not simply have to accept what a doctor told me.I started emailing and calling ophthalmologists in my area. By this time I knew that a DMEK would probably be the best course of action for me and I looked for a doctor willing to listen to what I needed and answered my questions. I finally (through a friend but that is a story for another day) got to see Dr. Michael Attenborough in Wynberg. He ran a few tests and asked if I’d be able to be at the hospital for my first cornea transplant three weeks later. That was now almost six months ago.
If not for the guidance of the Corneal Dystrophy Foundation and the Fuchs Friends group, I would still sit in almost darkness, with little hope. Now I can go for walks on my own and soon I’ll be getting new spectacles, which will enable me to drive. I can only say thank you and for those who have Fuchs, please, reach out to the Foundation and don’t give up on finding the right doctor for you.