Tuesday, November 18, 2008

Kelly Bothum writes about Surfing Online Lifelines for the News Journal

In her article today, journalist Kelly Bothum gave folks a look into a new online health site launching next month, while discussing why people go online for health answers and how they can connect on sites and thriving online communitities like http://www.trusera.com/. Bothum explains how Keith and Jennifer Schorsch's personal experience led them to launch Trusera:

"In 2004, Jennifer Schorsch's husband, Keith, suffered debilitating fatigue and facial paralysis, but more than a dozen doctors couldn't figure out his problem. It was only when a family friend called and offered some nonexpert advice -- "I think you have Lyme disease," he said -- that the couple were able to get Keith the help he needed.

That experience eventually led the Schorsches to start up Trusera.com, a social networking Web site that encourages people to share their health-related experiences. Visitors can browse categories, read member stories and submit questions to individual health communities on the site.

"Keith and I really feel that call saved his life, if not the quality of life," said Schorsch, who serves as marketing director of the Web site, which launched in June. "You realize you always want to have your doctor involved, but we felt that there was really a missing link -- that friend who has been through it."

For some Trusera users, Jacki Donaldson is that friend, even if they've never met her. The Gainesville, Fla., woman is a breast cancer survivor, mother of two sons and a blogger for Trusera, which has drawn visitors from 179 countries.

Three years ago, she started a personal blog about her experience with breast cancer as a way to keep family and friends in the loop about her treatment. Over time, the entries morphed into a form of communication -- and online therapy -- for her and her growing group of readers.
On Trusera, Donaldson has recounted those experiences, including her yearlong treatment with Herceptin. The cancer drug is used for HER-2 positive breast cancer, which occurs in about 20 percent to 30 percent of all women with the disease. She's heard from several Trusera users with the same type of breast cancer who worry about what it's like to go through that treatment.
"I think probably the biggest thing it does it soothes the panic," Donaldson said of her writing for Trusera. "The Internet can be dangerous because there can be a lot of unrefereed places out there. I think most women want to find someone like them who is doing OK so you have some hope going forward."

Reaching out to others

One of the strengths of online health networking, Schorsch said, is that the community does a good job of self-correcting erroneous or inflammatory statements. She pointed to a 2006 study in a British medical journal that found less than 0.2 percent of the 4,600 postings made on an Internet chat support group for breast cancer patients were misleading or inaccurate. Of the 10 incorrect statements, all but three were corrected by members within an average of five hours, the study found."

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