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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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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.
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.
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.
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
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
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
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.
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 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.
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
Original Graphics copyright Dorothy Acton
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