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!
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
Cardiac (Heart) Involvement
What is Scleroderma?
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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