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Judy Dee: Diffuse Scleroderma

Giving a little squeeze to the hand of someone you care for
is something most people take for granted.

Trees for Judy Dee by Shelley Ensz, ISN Artist Being able to express love and friendship by holding onto and giving a little squeeze to the hand of someone you care for is something most people take for granted. But for me, that simple act is no longer possible because of a disease that almost took my life—scleroderma.

In 1994, I noticed the first symptoms that would change my life forever. I became weak with body aches and pains. My skin began to harden and turn a shade of brown. At this point several of my fingers began to stiffen up and curl under.

After two years of being misdiagnosed and three doctors later, I found one who immediately told me I had scleroderma.

Then things began to happen fast. I was admitted into a hospital where I was told my lungs, heart and kidneys were already affected. My face began to tighten with mask-like features. Those of you afflicted with diffuse scleroderma know what my body was going through.

I was immediately put on kidney dialysis. My heart was breaking. I did not know what the future held for me at that time, but I was determined not to give up. Several more serious happenings took place during the seven months that I was on dialysis. I did not sway from my determination to fight this disease.

Through physical therapy I learned to walk again, feed myself and gained a better attitude on life. I learned to appreciate the small things life has to offer. It paid off! My kidneys began to function on their own again. My skin got softer. However, my fingers are still curled under, but I will not give up—as you can see, I am typing.

We are all survivors and determined to fight scleroderma. I had a tree planted in 2000, for all victims and survivors. It is 'our' tree of life and hope. This disease is our enemy and we must never give up, but fight hard to conquer it!

To Contact the Author
Judy Dee
New email address needed 07-19-06 SLE
Old Email Prefix: jad128
Story edited 09-28-04
Story posted 10-4-04 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Cardiac (Heart) Involvement
Difficult Diagnosis
Diffuse Scleroderma
Kidney Dialysis
Kidney Involvement
Lung Involvement
Pulmonary Fibrosis
Sclerodactyly
Skin Fibrosis
What is Scleroderma?
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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Go to Judy R. Thompson Devlin: Diffuse Scleroderma with CREST
 
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