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The most important thing that anyone diagnosed with systemic scleroderma can do is to work with a clinician who is a disease expert if at all possible. A typical rheumatologist sees only a few scleroderma patients in their entire career and as a result is not up to date on diagnosis and treatments.
Patients should also educate themselves from reliable sites such as the Scleroderma Foundation (slceroderma.org), the Scleroderma Education Project (SclerodermaInfo.org), the Mayo Clinic, and Johns Hopkins. As a general rule, they should avoid any sites that end with ".com" as they are usually sites that are trying to sell you something based on testimonials, but have little or no research support for whatever it is they are trying to sell you.