A L A B A M A E Y E B A N K N E W S B R I E F - P a g e 4
Editor’s Note: The Alabama Eye Bank appreciates the opportunity to recognize organizations dedicated to helping others receive sight. One such group of people is committed to helping those with Fuch’s Dystrophy. Most recently, we had the privilege of connecting with Karen Pardee of FuchsSupport. (http://files.fuchssupport.info/6%20Month.html). We thought you’d enjoy Karen’s story in her own words.
United Against Fuch’s Dystrophy
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Karen and her good friend Judy Davis, who has also found help through a cornea transplant. |
Fuch’s Corneal Dystrophy. That's the name of the eye disease that caused me to feel isolated, frustrated and dependent on others. I was unable to live a normal life.
I was only 47 years old, but my disease had reached the point
where I could no longer read, watch TV, or drive much at all, except to familiar sites during the day. Nobody understood, because they couldn't see anything wrong with my eyes and nobody had ever heard of it before.
What WAS this disease? What was happening to me? What could I have done to make life a little easier coping with the disease while it was in its earlier stage?
I did quite a bit of studying, and found out that this is a genetic eye disease where the cells in the inner layer of the cornea (called the “endothelium”) die and fill up with water. These cells are designed to pump water out of the eye, but when they 'die' the water doesn't get pumped out, and I was seeing things through a foggy, wateryworld. I sure would have liked to talk to somebody, ANYBODY, who understood how much my life in this world was changed.
The only cure for this disease when it's advanced is a cornea transplant. Thanks to the generosity of cornea donors, at the age of 47, I had my right eye done, and at the age of 48 , it was my left eye's turn. Now, at age 50, my vision is 20/20 in my right eye and 20/25 in my left eye with the help of Rigid Gas Permeable contact lenses.
I can finally SEE and be free of this wretched disease! I know there are a lot of people out there who are fighting the same frustration, worry, and loneliness because of having Fuch’s Corneal Dystrophy. I wanted to help them now that I had found answers.
A friend of mine in
By pooling our knowledge of ways to cope we have compiled a wonderful supply of Coping Tips for both Fuch’s Dystrophy and cornea transplants. We also have a library of information compiled for our members with links to over 200 sites full of information and help for people with this disease.
This, in addition to our member posting board and live chatroom, gives members instant access to others who have probably found answers to questions of common interest. This group is unique in that we SUPPORT the whole person and not just your eyes. We genuinely CARE about our members and show it by praying for each other on the posting board and being interested in each other's successes and failures. I try give a personal touch to our members who have a cornea transplant by calling them at home the day after their surgery to make sure they are okay.
If you, or a loved one, is interested in finding out more about our group, please email me at:
Information@fuchsdystrophy.org or check out our sites, beginning with www.fuchssupport.info and going on to our other sites in the links from there.