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Systemic scleroderma is a life changing experience for anyone. It often puts major stress on marriages as it is often has many "invisible" symptoms such as pain and fatigue. Many patients are finding that joining one or more support groups, both online and locally (where available) is a wonderful way to connect with others and get tips but also to help others by giving support and providing information about their own experiences with drugs or ealing with specific symptoms.
In my case, I made the unusual journey from being diagnosed in 1990 to now becoming an educator and published researcher. I also spend a couple of hours a day helping others, which I find very satisfying.