It started like a purple bruise that never healed. Then the itching began along with noticeable loss of pigmentation. I kept ignoring the symptoms thinking it was a sunspot or something of that nature. When my leg became swollen, I could not ignore it anymore.
Eight months into the disease, I was finally referred to a rheumatologist who has recently diagnosed me with morphea scleroderma. I have started taking medication for it, but it is really too early to see any signs of improvement. I hope it works.
Life with morphea is harsh. I have experienced more difficulty with what should be easy tasks. I continuously find myself opening a two-liter bottle or a milk jug with my teeth. My hands are no longer able to close into a fist position. I cannot straighten my left leg or my left arm. I wear sandals most of the time because my foot is in such bad shape. I hate this disease and have trouble understanding how or why this is happening to me. I miss the person I was and hate the person I have become.
I have hope that one day I will be able to wear shorts and run alongside my son without having to worry about what people think when they look at me.
Now I am on medication recommended by a doctor from the University of South Florida Health Sciences Center. I hope that it will work for me.
I am twenty-three and terrified that I am limited to what I do and how I do things. I think about my future and find more and more things that I have not done and probably will not do. I would love to go back to school, but worry about having to write papers, anticipating the pain that my hands would experience.
Although I am finding this to be the most terrifying and terrible time in my life, even more so than when I miscarried, I am finding a little bit of self-acceptance. This new treatment has reduced some of my symptoms and given me hope. As I see or feel any improvement, I believe my 'self' will start returning.
New email address needed 09-26-06 SLE
Old Email Prefix: jamessmackdown
Story posted 4-03-01
Story update posted 5-5-01
Story edited VH1: JTD 9-5-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
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!
TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!
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: