Log On For Support

Cathy Henderson poses a question to her online support group. "I don't need to hug them," she said of her peers with diabetes, but they do give her practical advice. (By Richard A. Lipski -- The Washington Post)
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Such online communities typically include discussion groups, journals and personal profiles of members, Loew said. Each member decides how much information to share on the public site and whether to accept invitations from would-be "friends" in the community. Marketing and hate speech are forbidden. Staffers monitor the online discussions and have the authority to break up fights, to delete inappropriate postings and to ban members who repeatedly break rules.

Members are also advised not to use the site to seek medical advice. "We say when you sign up for the community that this is not a substitute for a doctor-patient relationship," Loew said.

"We really had mixed feelings at first" about hosting an online community, said NORD's Mary Dunkle. "We worried there would be people trying to prey on the people on the site, either trying to sell them products or quack therapies."

The organization's leaders also feared that the community might become a source of medical misinformation. But thanks to the careful monitoring, such problems have not occurred. Currently, there are more than 1,800 members. "In the worst case, they print out a lot of materials to take in to the doctor on a visit," Dunkle said.

In one of the best cases, she recalled, the mother of a child with Soto's syndrome sent a message expressing frustration and asking for help. Children with the rare genetic disorder grow faster than average yet are developmentally delayed -- and because of their large size, teachers often assume they are much older and more advanced than they are.

"Somebody who was familiar with the syndrome . . . was able to give her some very helpful advice about what she was going through," Dunkle said.

Even for someone with a great doctor, talking with other patients can be helpful, said Whittington, the high school student.

"I ask [my doctor] the most questions, because she knows me best," she said. "But the support group is a good place to go to get different kinds of perspectives." You can learn the "kind of things that a doctor wouldn't really tell you." ¿

Susan Okie is a former staff writer for the Health section. Comments:health@washpost.com.