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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.

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

ISN Story Editor: Judith Thompson Devlin

Judith 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!

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

The most important thing in the world to know about scleroderma is sclero.org!