The World

Through Our Eyes

Follow this link to members' attempts
to depict how they see the world.

See Our View of the World

We are people who suffer an eye disease called Fuchs' (pronounced FEWKS or FOOKS) Corneal Dystrophy. We represent 1% of the population. We have a visual disability that we've inherited, and you can't tell it by looking at us. We have gathered into a support group called Fuchs' Friends, with over 1500 members (and growing) from all over the world, learning a lot about our eye disease by sharing our stories.

One thing we've learned is that this disease used to be thought to be a problem of older people. But many of us are still working, raising young children, active and productive. And this eye disease with a funny name has been for us a challenge as great as any other disability for which society makes allowances.

The medical explanation of the disease can be found on other websites, such as NIH and Natl Eye Institute. If you have no idea what part of the eye is the cornea, see diagrams at St. Luke's Institute.

Our sole purpose on this website is to help you see through our eyes and promote understanding of the way the disease impacts our lives.

1. Possible Stages

2. Uncertain timetable

3. The gradual decline

4. Normal eye tests don't tell the story

5. Depictions of how we see the world

6. The job problem

7. Depression

8. Typical Fuchie moments

9. Deciding when to get transplant

10. Support Group For Fuchs' Dystrophy

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Possible Stages of Fuchs'

Eye doctors often spot irregularities in our corneas long before we develop symptoms. Some have told our members that our corneas look like "orange peel" or "hammered metal." Or they tell us we have "guttata," or endothelial corneal dystrophy (these terms can go in one ear and out the other, particularly when the patient is not yet experiencing symptoms). Or they say the disease progresses slowly and may never cause us a problem. Or they tell us our eyes are many years older than our body. A few were told we have a progressive corneal dystrophy and will go blind. (What a terrifying way to break this news!) And a couple of our members said their doctor noted it on the chart and didn't even mention it, perhaps hoping to prevent premature or unnecessary fear and anxiety for the patient.

Part of the problem of coping with Fuchs' dystrophy is that it is so unpredictable. Even corneal specialists sometimes are reluctant to predict what will happen with any individual patient's eyes. A lot of our members first noticed problems with glare and light sensitivity, resorting to tinted eyeglasses with anti-reflective coatings, wraparound sunglasses, and a variety of visors and hats. Night vision is a special problem. Starbursts and haloes around headlights, tail lights, and street lights may take the Fuchs' sufferer away from night driving quite early on.

Another stage of Fuchs' is a foggy or cloudy vision caused when excess fluids build up in the cornea. This fogginess might be worse in the morning and clear up later in the day, or it might stay foggy all day (such as on a humid day), or it may come on suddenly at any time. Our members have noted that crying or having a stressful situation often brings on a case of the foggies immediately. Eventually the foggies may become so chronic that the sufferer becomes legally blind and the only way to regain sight is through a corneal transplant.

We with Fuchs' are very lucky that only a rare few of us have developed corneal blisters, which cause pain if they break. The pain ceased after those members had corneal transplants. Our support group gives those members special encouragement.

Uncertain timetable

Several of our members are "typical," with their Fuchs' taking 15-25 years to cause real vision problems. But others develop galloping vision changes, or begin blister pain even though their vision is still reasonably good. There is no way to predict how Fuchs' will affect the vision or how fast it will progress, if at all.

Anybody who is diagnosed with Fuchs' should remain calm, learn all they can about the disease and ways to cope with it, and keep a positive attitude. Our support group is living proof that there IS life after Fuchs, and some of us have found that coping with Fuchs' has brought us blessings as well as frustration.

The gradual decline

For many of our members, the loss of their vision was so gradual that they tended to blame it on dirty windshields, scratched eyeglasses, or worn out computer monitors. Many of them had their first wake up call when they plowed through a stop sign they hadn't seen because they had lost their ability to see the color red distinctly. Or they ran over a parking lot barrier they mistook for a shadow.

Oftentimes, these people can see well at one time of the day, but not at other times. Or they can see one day but not the next, and then the following day they can see again. It's impossible to predict the day when you are already driving to work before you realize that today you are a hazard on the road.

Fuchs' is called "Fickle Fuchs" in our group. Some of us lived with it 20 years before it caused problems. Others had a quick acceleration. Nobody can predict the Fuchs' timetable with any certainty. Our members stay in touch with their eye doctors and watch for any sudden changes in vision. Some of the symptoms of Fuchs' are similar to symptoms of cataracts, and only an eye professional can sort it out.

Normal eye tests don't tell the true story

The way visual acuity is tested doesn't tell the story of how the Fuchs' patient is REALLY seeing. Normally, the eye test is conducted in a darkened room and the chart is well lighted.

The problem with this type of test for a Fuchs' patient at the glare stage is that their vision is entirely different according to the light conditions. They may see quite well if the light source is behind them, but if they are looking at something that has light behind it, they are viritually blind.

For the patient who has reached the foggy stage, visual acuity may vary according to the time of day. We've had members who could see 20/300 at 8 am but be improved to 20/80 by 4 pm. Other things that contribute to foggy vision for our members are humidity, allergies, stress or fatigue, and crying. This fogginess of vision also affects contrast, including loss of color clarity and depth perception.

One member of our Fuchs' Friends support group had this comment about the eye test (the people in Fuchs' Friends have a great sense of humor):

"I think eye doctors should all have a driving simulator (like a pilot's training simulator) in their offices. They'd put us in the seat and we'd watch the eye chart go by at 30 mph. Of course, the eye chart would be green with white letters. A great test would be to have us find the address. Oh, and then what fun with a night driving simulator! They could test us with headlights and then we could play Find the Curb and Stay in the Lane with no stripes on the road. I think those eye doctors would be amazed." Vikki

Depictions of how we see the world

Here are some descriptions, depictions and simulations that may help others understand how we see the world.

To understand the challenges of reading text, take a book or newspaper, place four layers of wax paper over the page, and try to decipher the print. For a majority of our members, reading a newspaper was the first thing they had to give up.

Smear your eyeglasses with vaseline and attempt to carry on your everyday activities.

Here are some descriptions by our members of how they see:

"I was having so much trouble with the white Christmas lights and all evening I could not see the features of people I was talking with, my eyes were hurting from these ceiling spotlights that just kill. I think I am going to wear polaroid prescription glasses indoors when visiting when the lights are so bright. Not too polite but have to think of myself. It is very difficult to explain what is going on with our vision." Lon

"Sometimes you would sense contempt from others who would assert that you are trying to get attention/sympathy when wearing dark wrap around glasses, trying to get close seating during presentations, when requesting larger computer monitors, when dimming office lighting, or the like. It's amazing how many people believe that people are either totally blind, see perfectly, or could see perfectly, if only they would bother to get the right glasses." Paul

"Whenever I look at stoplights, I see a fuzzy effect around them, like they are encased in a small amount of very wispy cotton candy. When I look at other lights (such as the lights on my Christmas tree), I see rays of light radiating out from the center, but not a foot long, more like a couple of inches. When I look at other lights, such as mercury vapor street lights, it appears as if I'm looking through plexiglass that has been horizontally scratched by steel wool. I consider all of these special light effects as halos, just variations on a theme." Mike

"The light shows are incredible, but the ditches are rough on your alignment." Vikki

"I am experiencing frustrating days of fogginess and unpredictable sight. I'm finding it hard to work and carry out a busy schedule while contending with the unpredictableness of FD." Doug

"The fogginess dulled down my perception of color. I used to watch what other cars were doing to decide if the stop light ahead was red or green. " Dorothy

The job problem

Almost anytime you can't see well, you have a job problem. There are few jobs that don't require good vision.

We have Fuchs' Friends in many, many professions. Because the disease is so unpredictable, many of our members have struggled to do their jobs, more successfully some days than others. When the time comes that the "bad days" are more frequent than the "good days," some of our members were unable to continue working. They lost their jobs or businesses, resulting in a drop in income that raised havoc with their lives. This can put a strain on relationships, as vision loss changes a person's abilities, priorities, and self-esteem.

Fuchs' seems to be one of the disabilities that employers or state/federal agencies do not understand well enough to accommodate. Our quickly growing support group would like to see that changed. People with Fuchs' are suffering deeply, being indeed the "invisible disabled."

"Every disability -- permanent or temporary -- deserves to be looked at realistically. Every Fuchsy isn't so disabled we can't work, but some of us are. Every diabetic or heart patient isn't disabled either, but some are. It's just as wrong to "require" a disabled person to work, when it's impossible, as to refuse to let a capable person work." Jane

Fighting depression

Imagine that you are diagnosed with an eye disease and told that you will go blind. Imagine trying to explain to co-workers that TODAY you cannot see well and must ask for a helping hand. Imagine that you start out driving to a job, and before you arrive your vision has clouded over so much that you can barely finish driving to the location, let alone perform your job when you get there. Imagine that you can no longer see well enough to cut your own fingernails.

Nobody can maintain much self-confidence under those conditions. It seems you are always apologizing, or you do a lot of "winging it." You can't see street signs or stoplights, so you quit driving and must resort to begging rides all the time. If you tell people the name of your eye disease, nobody ever heard of it.

The feeling of being all alone and totally inadequate can foster major depression in Fuchs' sufferers. One of the purposes of our support group is to cheer on one another and help each other hang on to some of the joy in life.

Typical Fuchie moments

These anecdotes come directly from the experiences of members of our Fuchs' Friends, in their own words. We have many of these everyday life experiences with Fuchs'. We call them our "Fuchs' Moments," trying to accept them with a good humor and not allowing them to embarrass or distress us too much.

"I first thought that I was being blessed with some sort of extrasensory perception or something. I was taking a graduate class at a local university, when my white haired instructor walked into the neon lit room I almost gasped out loud. I turned to the woman sitting next to me and said "Do you see that?" quizzically, and a little startled by my demeanor, she replied "What?" "The aura, can't you see the aura?" My fellow student changed her seat after break. There was a rainbow of color around the Professor's white head, but alas I was the only one privy to it." Steve

"There are so many stories to tell like when I thought a horse was in the road and I stopped with traffic behind me and it was a tree on the side and the shade was in the road. OUCH." Rebel

"I went to the movie with my family. I was leaning against a rail waiting for my husband. I looked to my left and and saw a lady was standing about 10 feet from me. She was looking at me so I smiled at her. She smiled back and I looked away. After a moment, I looked back over and she was still smiling at me. I wondered to myself if this was someone that I knew. So I squinted my eyes and focused as best as I could. The first thing I noticed was that she was wearing the same color shirt as me. The second thing I noticed was that I was looking at myself in the mirror.........."Vikki

"Fuchs is such a strange disease. One minute you see fine and the next if stress kicks in you lose your sight into the foggies. When I arrived at the library my vision was limited but "OK" for me. While looking through the movie section, very slowly, it suddenly got very busy in my section. I became anxious because I felt I was holding people up and the stress took over. Moments later I could hardly see the movie jackets. Not to have a wasted trip I took any 3 movies in section "B." Well 1 out of 3 is not bad if you have Fuchs. I got to watch one new movie and two I had seen before. With Fuchs you never know where it will take you. " Fran

"We needed to take our car to the shop, so I followed in the other car. We took surface streets and I stayed right on his bumper. But at one corner he got through a red light and I didn't. Finding myself alone at a busy intersection was terrifying. The stress of the moment brought an immediate fog over my vision! I pulled into the first parking lot I saw and waited until he called my pager to find me. Shortly afterward I had a doctor appointment for a routine check-up. Doctor noticed my blood pressure was up. NO KIDDING!!!" Dorothy

Deciding when to get transplant

Deciding whether and when to have the surgery of a corneal transplant is one of the most "Catch 22" situations anybody has to face. There's the question of finding an eye surgeon to trust with one of your most important abilities--vision. Actually, that is not so difficult once you begin to study Fuchs' and research corneal specialists in your area. But if you live in a remote area, it can become a serious issue.

Our members have had their transplants sooner or later, based on how much their vision loss has impacted their everyday lives. Nobody can make the decision about when to have the transplant except the patient and the doctor. Most doctors tell us that when our quality of life is such that we are constantly struggling just to function, it is time. There is a delicate balancing act that goes on, because a corneal transplant requires a very long healing time before vision is improved. The stitches required may need to be adjusted until the new cornea has healed and can be smoothed enough to rid the patient of double and triple vision.

Here's one member's description of post-transplant vision:

"There is a faint shadow by every letter. Sometimes above, sometimes below. I am not doing so well seeing at a distance. Everything doubles and quadruples. My eyes seem to change every day. My Fuchs' eye does not seem to coordinate with my T-eye. Looked at the full moon tonight and saw at least 6 of them stacked on top of each other, plus a couple hanging on the side! What a light show! Driving at night is almost impossible. All the lights go wild. Big spikes coming out of all sides. And then seeing 2 or 4 of them to boot." Jan

There are few surgeries that require so much optimism and patience as a corneal transplant. You may have to dedicate an entire year of your life to the complete healing of your transplant and regained vision. It is tempting to think you can still "get by" for awhile before having the transplant.

Often one eye is more disabled than the other. If you wait until both eyes are useless, you can plan to put your life on hold for a long time before you can function normally again after the transplant.

It's devastating to Fuchs' sufferers to lose their ability to drive or do their jobs when they still need to make a living, or when they get to the point where they can't live a normal life anymore because of the foggies or blister pain.

Support Group for Fuchs' Dystropy

Fuchs' Friends offers sharing and caring. Members have said their life improved after learning the group's coping techniques (not the least of which is honing our sense of humor). Many say they are not as scared out of their minds as they were before they found us. All of us can still remember how upset and scared and frustrated we were after diagnosis. We who faced the transplant were encouraged and calmed by stories of members who already had the surgery.

We hope these descriptions and experiences have helped you understand a little better how Fuchs' affects people's lives. Here's How you can order literature.


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Page updated July 15, 2005, by Dorothy
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