One of the first very lucky contacts I had through my Fuchs'
webpage was fellow Fuchs' sufferer Bob, who also lives in
Calif. By email we built the official Fuchs' website and set up
a private Bulletin Board where many of us have gathered to
share information. This condition is so much 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.
Our group calls itself "Fuchs' Friends," and we now have Over one thyousand five hundred (1500) friends
from Australia, Brazil, Canada, England, Finland, France, Greece,
India, Ireland, Israel, Italy, Japan, Netherlands, New Zealand, Poland, Portugal,
Spain, UK, and all over the United States. In addition, we've been
in contact with Fuchs' sufferers from Northern Ireland, Malaysia, Mexico, Oman, Panama, Scotland, Singapore, and others.
We are at all stages of the disease, and many of us are still holding down jobs. We have men and women, our ages vary.
There seems to be little or no
printed literature available about the inherited eye disease called Fuchs'
(pronounced FEWKS or FOOKS) Corneal Dystrophy or the corneal transplant
procedure and healing. We "Fuchies" in Fuchs' Friends are hoping to provide
supportive literature for doctors to give their patients, or perhaps we
can get the attention of a medical entity that will offer to fill this
Here are six ways you can help accomplish this:
1. We have a booklet called "My Journey With Fuchs' Corneal Dystrophy,
Diagnosis to Transplant." It is the story of the 25 year scenario of a
typical Fuchs' patient from first diagnosis to eventually restored vision.
For very little cost, you can buy this booklet here
for yourself, members of your family, or for your eye doctor(s). We even
have a downloadable version for our international members and doctors.
Proceeds will be used to pay for domain name and webhosting for two
websites designed to help Fuchs' patients and their families. Visit them
and see for yourself:
One Person's Journey With Fuchs'
A Portal for Fuchs' Information
2. You can visit our IRS approved 501(c)(3)Nonprofit Foundation website The Corneal Dystrophy Foundation, click on the DONATE! in the left margin and make a donation either on line or via the US Postal Service.
3. You can sponsor the printing and mailing of a copy of this booklet
to one or more doctors, to a city or state of your choice if you wish, and
we will have the book sent out with a notation that it was provided
through your generosity. You may have your name listed on the booklet or
remain anonymous. Email firstname.lastname@example.org
to make the arrangements. Our hope is that eye specialists who receive
this booklet will want to order more copies for their Fuchs' patients.
4. You can visit our website The World Through
Our Eyes and acquaint yourself with the visual problems and
idiosyncrasies that come with Fuchs' Dystrophy. You can use our printable
version to pass along to others.
5. You may purchase a CD from a talented musician who has become our
"Angel," David Folsom of Nashville, TN. He is donating the entire proceeds
of this CD sales to help support our group. Read about David's generous
offer, listen to samples of his original music, and order his CD
HERE. We are so lucky to have a person like David who wants to help.
His music is beautiful, as is his heart.
6. You may make a contribution through the Amazon Honor
THINGS I HAVE LEARNED FROM MY
Most of us wear humungous sunglasses or goggles, whether we call
them wraparounds or "bullfrogs." Some of us wear two or three at once.
Many of us use Muro Ointment and/or drops, and some use Refresh. If you
have Fuchs', ask your doctor about these.
Humid days make our vision foggier. Crying doesn't help, either.
At least one of us was told by a doctor not to rub our eyes and to eat
We all have funny stories about things we saw that we thought were
something else until we got surprised!
Many of us have discovered that fatigue or stress causes our eyes to be
a little worse during those times.
My Fuchs' Friends taught me how to make the print bigger on my computer
screen on days I need it.
We are all getting expert at finding information on the Internet and
digging up the names of the very best eye doctors in our area.
Most of us were scared, worried, and upset when we were first told we
had Fuchs'. And many of us were not given much information about Fuchs'
and had to go find it on our own.
We are getting very good at lining up the right questions to ask when
we meet with our doctors.
And finally this bit of wisdom from one of our members about finding
the best possible doctor:
I DO hope you can find an excellent corneal specialist who is not only
a good and experienced surgeon but also available for the essential
after-care. Nothing good happens without a good doctor. Before I found the
specialist I see now, I asked two optometrists I respected for a
recommendation. I went to a good hospital and asked their eye doctors who
they looked to as examples of outstanding specialists. I even asked my
optician who was kind enough to ask several of his optometrist friends for
the name of a highly regarded corneal specialist. When you start hearing
the same name from several reliable sources, you know you've hit the
jackpot. It's so important. posted by Fuchs' Friend Eileen
FEATURES OF THE FUCHS' FRIENDS
Only invited members are allowed
Discussions are private, for
Group is not listed in a public directory
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To see a sample of the messages, go here to our
"Messages" on left side
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requirements are your birthdate, M or F, and zipcode
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