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 is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. 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:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email firstname.lastname@example.org to request our Welcome email, or to report bad links or to update this page content.