Finding healthy support in the online world
By Tim Barker and Blythe Bernhard
ST. LOUIS POST-DISPATCH
08/15/2008

For the first six weeks, she lurked on the perimeter. Watching. And reading.

She learned that flaxseed oil might help with her mood swings. And that zinc supplements could slow the rate of hair loss caused by some of the medications used to treat bipolar disorders.

But more than anything, Joan Barnidge saw an opportunity for understanding.

And so, bit by bit, she found herself joining an estimated 20 million Americans using message boards, blogs and websites in the name of health. Barnidge and others afflicted with life-altering illnesses increasingly see the Internet as a haven, a place to go for advice and moral support. They share stories, compare notes on drug side effects and find shoulders to lean on.

"There is a basic need to connect that all of us have as people," said Michael Rabby, an assistant professor of communications at the University of Portland. "There's a need to not feel alone and to know that we aren't the only ones going through something."

That's what keeps Barnidge, of St. Louis, coming back to DailyStrength, one of the larger online communities catering to a wide range of illnesses.

"I've got this great family that understands the best they can," said Barnidge, who has been dealing with her illness for more than three decades.

But how much, she asks, can someone understand if they've never lived it? "I tend to just pretend I'm fine when I'm not," she said. "It's easier that way."

But that changes when she goes online. All pretense slips away. Her friends in the bipolar forum know about the mood swings and the depression. They have been through the same thing. They understand.

Those friends came out in droves a month ago after the death of her 19-year-old cat. Messages of sympathy flooded her inbox throughout the day, reminding her that she was a part of something larger.

"It's a bigger deal than a cat dying," she said. "There are people in serious pain who don't think they'll get through the day."

As with so many other things involving the Internet, there are pros and cons to this rapidly expanding corner of cyberspace. No one argues that an educated patient is a bad thing, but it's the quality of that education and what a patient does with it that raises concerns.

The appeal of sites like DailyStrength is easy to see, particularly for anyone suffering from a condition that carries any sort of social stigma. The anonymity granted to users allows them to enjoy a level of freedom they don't have in their everyday lives, said Doug Hirsch, founder of the site, which draws more than 650,000 visitors each month to some 600 communities.

"People don't generally walk up to someone and say "Hi, I'm bipolar, let's talk," Hirsch said. "They're just looking for a place where they feel like they can talk about it in comfort."

But some sites go even further.

One of the more aggressive is PatientsLikeMe, which focuses on a small group of illnesses, including multiple sclerosis, Parkinson's disease, AIDS and bipolar disorders. The site launched in early 2006 and has 20,000 users, including a mix of patients, researchers and doctors.

What makes the site different is the way it collects detailed information from users — including diagnosis, symptoms and treatments — to compile charts and graphics. One recent page, for example, showed how more than 650 users with amyotrophic lateral sclerosis, often referred to as Lou Gehrig's disease, have fared with the drug Riluzole.

Access to that sort of data has prompted some health experts to worry that patients will be tempted to alter their own treatments or try unproven medications.

Ben Heywood, co-founder and president, says the site is simply trying to help people learn from others by collecting and cataloging, in real time, the experiences of thousands of patients.

"This doesn't replace a relationship with a clinician," Heywood said. "It's about giving everyone the most information possible to help them make the right decisions."

And while this may cause some grumbling among doctors who'd rather not be questioned by patients, the quest for knowledge seems to have been accepted by most health professionals. With a few notes of caution.

Robert Phillips, director of the Center for Coping in Hicksville, N.Y., has long been a supporter of patients using the Internet for research. He just asks them, particularly those with life threatening illnesses, to employ a healthy dose of skepticism.

"These people are desperate for information. Desperate for a cure. They are ripe for manipulation," said Phillips, who worries about hucksters trying to sell bogus treatments and cures. "It's a high-tech type of witchcraft."

The Internet, and the flood of information it brings, can also pose a danger to hypochondriacs, said Dr. Brian Fallon, associate professor of clinical psychiatry at Columbia University Medical Center.

Fallon, who studies "cyberchondria," said the Internet inflames anxieties because "you can type in a symptom and get 100 different possible diagnoses."

"Patients who are predisposed to have a lot of anxiety will latch on to the worst possible scenario, even if that scenario is extraordinarily remote, and start to believe they have that illness," Fallon said.

There is one segment of patients for whom the Internet represents what might be the best way to get more information on their disorders. There's no shortage of information, on or off the Internet, about conditions like multiple sclerosis, diabetes or lung cancer. That's not the case for people dealing with the rarest of disorders.

"These folks can learn a lot about a disease that you really don't have a lot of time to figure out," said Dr. Robert Lamberts, a general practitioner from Augusta, Ga., who also writes a medical blog. "If there's something rare, I'm never going to become an expert."

That simple reality is what forces people like Sheryl Grossman of St. Louis to turn to the Internet. The few people she knew to have Bloom's Syndrome had since died. Knowing the odds that 250 other people worldwide must live with the genetic disorder, she set out nearly two years ago to find them.

Within a couple of weeks of launching www.bloomsconnect.org, Grossman was in contact with families in Israel, Argentina and the Netherlands. Today, more than 80 people with a connection to Bloom's visit the site for practical information on living with the rare condition marked by small stature, a weakened immune system and a high risk for cancer.

Grossman, 32, geared the site to answer practical questions like where to find high heels in small sizes and how to interpret disability rights laws.

"We're far-flung and we're such a small group, it's truly dependent on that network," Grossman said. "Kids will grow up knowing kids like them. That's what brings me to tears. This couldn't have happened without the Internet."

It was just this sort of story that inspired a Clayton man to launch a site this summer dedicated to rare disorders. During his sophomore year at Indiana University, David Isserman went to work for a pharmaceutical company, where his tasks included managing a website focused on adrenomyeloneuropathy, a rare metabolic disorder with similarities to multiple sclerosis that affects about 30,000 people worldwide.

It was an informational site only, offering no way for visitors to interact. And judging from the e-mails he received as administrator, that's exactly what they were looking for.

So Isserman, who is heading to Columbia University in New York, and a friend started RareShare with a focus on disorders that affect 200,000 or fewer people worldwide. You won't find any common names among its 650 or so communities dedicated to conditions like antiphospholipid syndrome, hypophosphatasia, citrullinemia and acoustic neuroma.

"There are a lot of sites out there like WebMD for dealing with sprained ankles," Isserman said. "But these diseases are overlooked on other sites for the most part."

tbarker@post-dispatch.com | 314-340-8350

bbernhard@post-dispatch.com | 314-340-8129

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