I was diagnosed three months ago with Systemic Sclerosis. I am a thirty-five-year-old woman with a four-year-old daughter. I have only been sick for ten months, so this is a rapid onset.
Raynaud's came first. Within weeks, came swelling and joint pain; then a terrible pressure in my head. I have pain in the muscles of my eyes. It is not Sjögren's. It is believed to be inflammation in the eye muscles. After about six months I began to notice I could not make a fist. I did some research and knew what the diagnosis would be. By the time I got the diagnosis I had tightening of skin up to my elbows, feet, and now my stomach. I have a hard time walking because my feet hurt so much. I also have episodes of shortness of breath.
I am eagerly awaiting an appointment with Dr. Korn at Boston University in a few weeks. I cherish every day with my daughter and only wish I had lived every day differently before I got sick. I also hope my daughter will never have to deal with this disease as it should not be hereditary. I look forward to hearing from other scleroderma patients.
New email address needed.
Old Email Prefix: joe4th
Story posted 8-22-02
Email note posted 01-18-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
In Memory of Dr. Korn
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.