I am now thirty-two years old and have had morphea scleroderma for almost twenty years. Unfortunately, it has not stopped and it has taken over a lot of my body: my stomach, back, right arm, both legs, right hand, both feet, and neck.The morphea is mostly dark in color with some being white and plaquelike.
I was on medication for almost ten years with little to no effect. When I started having children, I had to stop the medicine. I have also tried PUVA light treatments, but to no avail. I now receive cortisone shots into the lesions every time a new lesion appears, which is hard to tell because they are so widespread.
I am done having children now and am looking for something else to try. I am interested in experimental treatments aside from just using makeup to minimize the existing scars.
I feel very emotional about this at times, but I am grateful that, so far, I do not have any internal problems.
New email address needed 08-06-09 SLE
Old Email Prefix: jltjlt
Story posted 2-9-01
Story edited 7-23-03 SLE
Story edited VH1: JTD 9-5-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Ineffective Treatments: d-Penicillamine
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 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.