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Jan 21, 2012 · Anyone here have Fuch's Dystrophy? in Eye Conditions

Hi Bettyann, I think you will find that Fuchs Dystrophy is a genetic disease that eventually affects both eyes. I was misdiagnosed by two ophthalmologists before I got a third opinion at a teaching hospital and found that I had Fuchs and was actually in a late stage. They said the cataract surgery pushed by the first two doctors could not only have hastened Fuchs, but that my cornea could not have survived the cataract surgery and would have led to eventual transplants anyway (after paying the doctor $6400 out of pocket for the special lens). They never mentioned that I had the symptoms of Fuchs.

It’s hard to find a good doctor. I’d suggest going to a teaching hospital if you can. Don’t put too much stock in these doctor rating lists you find on line or in magazines because they are sometimes patients rating doctors by their communication, rather than technical, skills or political in that doctors get other doctors/friends on the Top Doctors lists. Go to US News and World Report for their Top Hospitals list. Find the closest one and pick an ophthalmologist there.

I am having a transplant Feb. 10 at Johns Hopkins in Baltimore. The progression of Fuchs from the initial finding of gluttata varies greatly, but if you have the gene, Hopkins told me that one of my parents definitely had it but may not have lived long enough for it to develop. My kids have a 50-50 chance of getting it as well, so should be tested. Doctors can tell if you have the gene in your 30s or 40s, even if you don’t develop the symptoms for decades..

Also, the doctors often use a cornea thickness measure of 630-640 mm to determine diagnosis. But, my Hopkins doctor (who is passionate about this disease) says the number is somewhat arbitrary. Because I had had morning blurriness for two years, he said my cornea was already disintegrating even if my numbers were lower than 600. I thought I was just getting old! Maggie/Maryland