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May 14, 1997

Online Support Group Helps Patients Live With, Learn More About the Rare Skin Cancer CTCL-MF

Author Affiliations

JAMA contributor

JAMA. 1997;277(18):1422-1423. doi:10.1001/jama.1997.03540420016005

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A WOMAN and her husband went to see their family physician after her dermatologist told her that she had cutaneous T-cell lymphoma (CTCL), a form of lymphoma that usually starts in the skin. "Our family physician was not familiar with the disease (which often progresses slowly)," the husband wrote members of an online support group for people with CTCL, "and hearing only the lymphoma part, gave her 6 months to a year to live. It took us a month, and the finding of this group, to sort out the truth."

Online support groups, as this message suggests, can give patients and their families practical information as well as reassurance that they need not face their illness or disability alone. Although these groups function much like face-to-face groups in the community, they meet 24 hours a day, enabling participants to read or post messages at any time. The frequent exchanges commonly