Systemic sclerosis is commonly called "scleroderma"

because the most obvious symptom is "hard skin." Being a systemic disease, however, it's more than skin deep. The fibrosis, or scarring, it causes can occur anywhere there's connective tissue in the body, and that's almost everywhere. Add to that the malfunction in and damage to blood vessels it can cause, and it seems like a sure recipe for disaster.

Even though most systemic scleroderma patients will not die from complications of their disease, most of us struggle to live with the affects. Profound fatigue is quite common, and you can imagine how that impacts someone's life. We frequently have the joint and muscle pain of secondary fibromyalgia, and almost all have some gastrointestinal involvement - at the very least, GI reflux. Raynaud's phenomenon is constant in about 97% of us - cold and stress cause blood vessels to spasm shut, cutting blood flow to hands, feet, nose, ears, and tongue. And these are the "minor" symptoms.

When it gets dangerous, scleroderma can cause fibrosis in the lungs and heart, further into the GI tract where it can cause malabsorption of nutrients, in the kidneys and it can affect the pulmonary artery. Treatment is getting better - kidney complications used to be the number one killer in scleroderma and are now very treatable with ACE inhibitors. But not all treatments work for everyone, and some just have limited usefulness.

You can find extensive information about all the forms of scleroderma at the Scleroderma Foundation website - http://www.scleroderma.org. I'd also recommend calling them at 1-800-722-HOPE for their free booklet, "Understanding and Managing Scleroderma," written in part by Dr Maureen Mayes, author of "The Scleroderma Book," another good source of info. The Scleroderma Foundation has numerous live support groups in the US where you and your mom could meet and talk to other patients and families about coping. They also directly or through their chapters sponsor local and regional educational meetings to not only benefit patients, but to spread information to health care providers on the latest research and treatments. Also, the SF funds over $1 million each year in peer-reviewed scleroderma research.