In 1990, my healthy and bright six-year-old daughter, Jenny, complained that her right foot was itching and hurting. Soon after, dark spots mixed with white patches appeared on her foot. Her back, just below her armpit, and the front of her right thigh began to show the same patchiness. Her foot began to contract and became difficult for her to straighten.The doctor said it appeared to be morphea, and possibly, scleroderma.
I immediately searched for any information I could find, but to no avail. There was very little information back then, even in the library. The doctor explained that it was a disease in white women usually between the ages of thirty-five and fifty. He described systemic scleroderma with the tightening of the skin which usually began with the hands and then moved on to other parts of the body with the organs coming last. The ultimate prognosis: death.
We were horrified but told not to worry. Not all cases are extreme and because Jenny was so young, she would probably have a better chance. The only correlation we found was a tick bite Jenny had received three weeks before the first appearance of morphea. She was on an Indian Princess campout with her father, and although he pulled the tick out of her back (right side), the tick's head remained.
We eventually prayed over Jenny with our minister asking for healing and that the morphea would stop. And it did.
My daughter is now fifteen, still bright, but has been left with some permanent, brown scarring on her leg, foot, and back. Our doctor recently gave her some bleaching cream to try to restore some of the color, because it is visible when Jenny wears a bathing suit. She has forgotten a lot about the morphea, but I have not.
About the same time Jenny was diagnosed with morphea, she began to lose some of her hearing. She now has fifty percent loss in one ear and a thirty-five percent loss in the other. I cannot help but wonder if there is some correlation. Is hearing loss associated with morphea? Her hearing specialist has asked this question because we cannot find any other cause. She had perfect hearing prior to age six and no traumas.
I am particularly concerned with the reoccurrence of morphea, or the possibility of systemic scleroderma. I was happy to learn that morphea usually does not recur, and that it does not progress into systemic scleroderma.
New email address needed.
Old Email Prefix:janespiller
Story posted 8-18-99
Email address updated 1-30-02
Story edited VH1: JTD 8-22-03
Email note posted 01-24-05 SLE
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Type of Scleroderma
This story is featured in the book
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: