Jo H: Systemic Sclerosis

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.