The New Patient Power

Faced with a torrent of information, Walther and her husband couldn't make up their minds about the safety of vaccines. "So we just ruled them all out," she says, a decision that nearly had disastrous consequences. When the new baby, Mary Catherine, was 11 months old, she came down with Hib meningitis, a dangerous disease of the central nervous system that could have been prevented by vaccinations normally given in the first six months of life. She spent 10 days in the hospital and had a slow but eventually successful recovery. And her mother finally located research studies that persuaded her vaccines are safe.

The most trustworthy information generally comes from Web sites run by universities, medical associations and the federal government. The National Institutes of Health operates a vast, informative site (www.nih.gov) that serves as an umbrella for those of its 27 separate institutes and centers. One of the more useful NIH offerings is medlineplus.gov, a site maintained by the National Library of Medicine.

But even the best information must be handled with care. When he first noticed blood in his urine, Jerome Freedman, 61, a Silicon Valleysoftware designer, went straight to the Web. "I self-diagnosed with four possibilities," he says. His doctor narrowed it down to one: bladder cancer. The usual treatment is to remove the bladder, but Freedman went back on the Internet and found research by a Harvard doctor suggesting that a less invasive approach, including chemotherapy, might work. With the approval of his hospital's tumor board, Freedman selected the bladder-sparing treatment. He has been in remission for three and a half years now.

Sometimes, however, all the Web sites in the world don't add up to a cure. "Anyone with psoriasis can get on the Internet and start talking about what they think is the cure," says Dr. Jim Nigro, a dermatologist in Houston. The trouble is, psoriasis can't be cured, despite all the remedies touted on the Internet. Internist Barron H. Lerner, a professor of medicine and public health at Columbia University in New York, says dealing with Webwise patients can be frustrating. "If you have 15 minutes and you're spending each visit talking about the crazy things they're finding on the Internet, you can never deal with more substantive issues," he says. But Lerner concedes: "It's good to be challenged to make sure that you're up to date and that you know what you need to know. It pushes you."

Whether they like it or not, family doctors are not the sole caregivers for some of today's patients. The right support group can provide useful information and build morale. "You can do good psychotherapeutic support online," says Morton Lieberman, a professor of psychology at the University of California, San Francisco, who has studied the work of breast-cancer groups. Soon after John McManamy, 51, was diagnosed with bipolar disorder, he found a helpful Internet bulletin board. (His eye was caught by a joke posted there: "You know you're bipolar when you think Robin Williams is too laid back.") A former financial journalist, McManamy now writes articles on mental health for a Web site called Suite101.com, where he adopted a title that was offered to him: depression editor.

Sometimes the Internet is the only way for nondoctors to learn about extremely rare diseases. When Genevieve LaGrow was 18 months old, the muscles in her legs began to tighten up. Three different pediatric neurologists diagnosed her with cerebral palsy, and one of them wanted to operate on her to lengthen her tendons. "She would have been mutilated by that doctor," says her father, Craig, whose family now lives in Colorado. Genevieve spent the years from the ages of 4 to 8 in a wheelchair while her father scoured the Internet for answers. Eventually he came upon a "bizarre" sounding ailment called dystonia, and then he located a New York physician named Susan Bressman. "It turned out that she was the guru of this tiny little field," says LaGrow. Bressman told him about a dopamine-based drug called Sinemet that can help a small subset of dystonia patients. At 8 a.m. on May 13, 1998, Genevieve took the medicine. By noon, she was a new person. Today, at 11, she's a champion swimmer.