As the mother of ten-year-old daughter who has been struggling with what she refers to as "weird skin", I was so pleased to come across this web site to share our story. It is my hope that someone out there will be able to shed light on this mysterious disease.
When my daughter was about eight weeks old, I noticed a strange patch of skin on her inner thigh. It was almost like scar tissue. The pediatrician just blew it off as "dry skin." The patch remained the same for as many as five years, with no complications, although it did start to discolor. Now it is a slightly orangish yellow color.
I always pointed the skin out to subsequent pediatricians. None seemed concerned. When my daughter was five, she contracted another strange disease called Kawasaki's Disease. She was hospitalized and treated with intravenous medication. She recovered with no further problems.
Within six months of that, she started to present with other patches of thick skin. When I realized it appeared to spreading I called a dermatologist. Three skin biopsies have been done and a lot of blood work, but no diagnosis was ever firmly made.
The patches are not dark in color. They are whitish, firm, and she can't feel her skin in these spots. There is also no hair in these areas. It now covers one fourth of her back, parts of her stomach, and her upper thigh on one leg. The patches are not round, but like ink stains. Not symmetrical, but sporadic. She has no pain with them, but they continue to spread.
A new dermatologist now wants to do two additional biopsies, and more blood work. Although no doctor will say for sure that this is what she has, I know in my heart what it is. I hope to find out in the next few weeks. Is there anything that can stop it from spreading?
My daughter is a bright happy young woman. These spots do not bother her a bit. I fear that she may be limited physically if this continues to spread. She tells me, "Don't worry, Mom, I am fine!" I love her spirit so. Any info would be so appreciated.
New email address needed 09-26-06 SLE
Old Email Prefix: karenrodey
Story posted 11-9-00
Story Artist: Shelley Ensz
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.