I was diagnosed with morphea scleroderma when I was fifteen.
I remember going to the dermatologist and being scared to death; if the doctor that I had been going to for years did not know what it was, who would? The dermatologist did a biopsy. I am not going to lie, it hurt, but the knowledge was worth the pain.
I found out what it was and I felt lucky as it could be so much worse. But I still have a lot of issues, emotional and physical, to deal with. The scleroderma is limited to my left ankle and foot, but it has caused the entire backside of my leg to be horribly purple and blotchy.
I am only eighteen and I want to wear a mini-skirt, and go swimming, and not be self-conscious. It is hard. The disease also causes really bad spasms in my ankle that awaken me at night and distract me in class. The spasms make me worry that maybe the scleroderma will progress. I also have no control over the spasms and it is so frustrating.
The worst part for me is that because I do not have a very severe case of it, I sometimes feel like it is not real and I am just whining. The whole thing can be really draining and when I am stressed it is worse. But I am learning to let go and just trust the doctors and the research.
New email address needed 08-06-09 SLE
Old Email Prefix: k_weickel
Story edited10-18-05 JTD
Story edited 10-19-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Types of Scleroderma
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.