My eye regalia Journey With Fuchs' Dystrophy

Photo: Dorothy, age 52, in full eye regalia (Hubby, Richard)

My Symptoms and Timetable

When It Started

When I was in my mid 40's, my ophthalmologist mentioned that I had a cataract starting and another eye condition with a tongue-twister name. I had no symptoms and the long name meant nothing to me. I forgot about it.

Glare and Some Helpful Tips

When I was 50 I had some bad experiences driving on the freeway at night. There was a lot of glare from the oncoming headlights. Then on a long summer auto trip I burned my corneas, probably from not wearing sunglasses all those days on the freeways. During treatment my doctor again mentioned my eye condition. This time I was paying attention and made a note of the name, "endothelial dystrophy." He mentioned Fuchs' Syndrome. I had no idea what it was all about. When I ordered new glasses and told my optometrist what I had, she suggested putting a tint in my lenses and adding an anti-reflective coating. It was one of the first and most helpful things I tried. I also began to wear oversized wraparound sun-glasses, and sunvisors became a staple of my wardrobe.

Second Opinion

At this stage my eye problem was distressing me so
much that I tracked down a corneal specialist, Dr. Ronald Gaster at University of California at Irvine. His diagnosis was the same as that of my regular doctor. I met again with my own doctor and he set me up for a visit to the medical library at St. Joseph Hospital, where I read everything I could find about Fuchs'. My notes from that search are linked at the bottom of this page.

Basically, as I understood it, the cornea is a clear "window" covering the eye much like a watch crystal. With this dystrophy, the cells in the corneal endothelium die off and do not regenerate, and the spots or scars left behind help cause the glare. Instead of looking through a clear glass, the effect is more like looking through molded glass with bubbles or textured surface. It splatters the light all around. I also read that the cornea may eventually get "edema," thickening and holding fluid which impairs the vision. The effect is like trying to look through a steamed-up shower door.

According to my research, Fuchs' is an inherited eye disease. I contacted my younger sisters and learned that a couple of them had similar symptoms of night glare. However, to my knowledge my sisters have not been diagnosed with Fuchs', and the glare problems may be attributed to other eye conditions such as cataracts. I have never known anyone else in my family to have had Fuchs'.

For several years I settled into the sunvisor routine, and changed my oversized sunglasses from green tint to gray tint, because the gray made it possible to see reds better (important for driving!). I gave up night freeway driving entirely. I saw streetlights and headlights with halos or rays of light coming out from them like needles. Red and green stoplights were surrounded by a colored bright fuzz. On surface streets at night and during the day if the light was behind me, my vision was quite good. When the glare hit, the vision faded in and out.

Next Stage, Foggy Vision

The "scummy" symptom started when I was close to 60. It was much worse in one eye which had had a cataract removed. In the morning I'd notice that I seemed to be looking through a heavy fog or a steamed-up window. Usually it would clear up as the day went on, but within a year it became such a problem that I again talked to my doctor. He gave me an ointment to put in my eye at night, along with some drops for the daytime. The ointment and drops are a kind of saline solution which helps to draw away the water. He also suggested that wafting a hairdryer across the eye might help make the excess water evaporate faster.

Some days the mist doesn't clear off the eye all day long. There doesn't seem to be much rhyme or reason to it, but I have figured out a few things that for me will make the foggy eye worse:

1. Lying down, Who needs a nap that leads to hours of misty vision?

2. Bending over for any amount of time, such as bending over needlework, digging through file boxes on the floor, pulling weeds. "Heads up" work I handle pretty well. (Fortunately that includes using the computer.)

3. Crying. I'm the worst at sad movies. But any tears building up are squelched quick. Otherwise, I know I'll be soon in "the fog."

4. Hot and humid days.

For more about Symptoms and Timetables, see Letters From Dorothy.

My Fuchs' Light Shows

I wish I could paint what I see with my Fuchy eyes. The amazing colors and shapes I get during certain eye tests should be in great demand as art. My view of streetlights and stoplights is hard to describe. Stop lights glow as a bright colored fuzz with a "hammered metal" effect in the halo. Streetlights have hundreds of narrow long rays coming out from the glowing center. Beautiful to behold, but the pits for trying to drive a car. One night I was looking at the full moon and the glow of light around it looked like cracked ice.

What's Next?

Fuchs' can move slowly, and I hope it continues to do so in my case, because my research tells me the next stage may be painful and in the end may require a corneal transplant. Corneal transplants are not as simple as cataract operations, which people can almost get done on their lunch hour these days. The cornea transplant as of now requires a real cornea from the Eye Bank. The operation requires stitches, and in the healing process the eye can change shape causing sight to "get worse before it gets better" and maybe not improve the vision at all. I am willing to wait until my vision gets pretty bad before going for a cornea transplant. I hope the technology will continue to improve.

At this point I have the best eyeglass prescription possible, I use a magnifying glass a lot for small print and read only what I must (because it's so much work). I cancelled the newspaper and read the news online. I can work at the computer with or without the print enlarged. I can still drive (barely) but choose not to do so because California drivers go like a house afire, and my vision is not sharp enough to see street signs clearly, my depth perception is off, and I have trouble distinguishing from a distance whether traffic lights are red or green. (Yellow traffic lights are OK.) Otherwise, I see colors well, and a trip to a glass art gallery gives me a "light show" beyond what others see, I'm sure.

Transplant Time

The Summer I turned 63, the vision in my left eye nose-dived to 20/300. The right eye was holding steady at 20/50. It was decided that I should go ahead with the corneal transplant Nov. 14. Several people in my Fuchs' Friends support group who had the transplant had given me great information and encouragement, and although I knew the healing process would take a lot of commitment, I was ready to go forward. I kept a journal of my transplant. See My Corneal Transplant.

Ways to Help Yourself

1. GET INFORMED! Hit these links.

Visit Links to the Best Informationabout Fuchs' Corneal Dystrophy on the Internet

Corneal Anatomy 101, simple analogies I've learned from the experts

My Research Notes from sources at ST. Joseph's Hospital Library


Fuchs' is easier to deal with when you have knowledge about how to live with it. And it's great to find others who know what you are going through. If you have corneal dystrophy, do yourself a favor and join Fuchs' Friends Support Group, now nearly 1500 in the same boat with you.




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Through a Glass, Darkly

Page updated July 15, 2005, by Dorothy
Original Graphics copyright Dorothy Acton
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