Doing Better at Doing Good

Social media let those with rare diseases share their stories

October 27, 2012 

For about as long as she could remember, Sarah Kucharski’s own body was a mystery to her.

Beset in her preteen years by extreme gastrointestinal problems that baffled doctors, Kucharski saw her problems worsen with age. As a senior studying journalism at UNC-Chapel Hill, her blood pressure shot up to alarming levels. The following year, migraines began to plague her.

By 24, she’d undergone a triple bypass operation involving her abdominal aorta. Three years later, she suffered a stroke. The bypass that had preserved her kidney several years earlier had failed, so she had the kidney removed. And all the while, medical specialists across the state remained stumped by the underlying cause of these catastrophes.

“Basically for 31 years, I was kind of a lonely freak,” says Kucharski, who lives in Canton near Asheville. “I was the only one I knew at my age who had the severity of medical issues that I had.”

Kucharski did have at least one thing working in her favor, in addition to a patient husband and sympathetic friends: research skills honed during a decade as a newspaper reporter.

She started investigating herself. By last year, she was ready to make a well-educated guess as to what ailed her: fibromuscular dysplasia, a rare disease involving the narrowing of arteries that is most common in women.

She checked with another specialist, who ordered some more tests. It turned out she was right.

Finally, at 31, Kucharski had a name for the root of her suffering. But there wasn’t a cure. There wasn’t even an obvious place to turn for peer-to-peer support. So she decided to start one. A year later, she’s become one of the nation’s most visible advocates for raising awareness of FMD.

Along the way, she’s also put a local face on a rising trend: the remarkable power of personalized research combined with social media to rally sufferers of rare diseases.

Kucharski had never been an avid user of social media, but she was willing to try pretty much anything to understand more about FMD. She also knew she couldn’t wait for the medical establishment to make the first move. There are about 7,000 rare diseases, defined in the United States as those that affect no more than 200,000 people. With such small patient pools, drug companies are reluctant to explore treatments and medical professionals often don’t know the diseases when they see them.

Through Twitter, Kucharski learned about a medical conference at Stanford University that might help. She won a scholarship to attend and was inspired to use her journalism skills to build something she’d never had – a community of FMD patients.

FMD Chat

In October 2011, FMD Chat, a nonprofit, online peer-to-peer support group was born.

“It’s one of those moments when you figure out, ‘This is what I’m supposed to be doing!’ ” she says. “This work marries my skills and my passions in a way that allows me to accomplish something.”

And Kucharski is accomplishing many things with little more than her computer. She’s attracted more than 600 followers to FMD Chat’s Facebook groups, including a sizable international contingent, and packed the group’s website at www.fmdchat.org with articles and other resources.

Two prominent physicians from Stanford and the Mayo Clinic have joined FMD Chat’s medical advisory board. The nonprofit recently raised $5,000 in seed money through an online crowd-sourcing campaign to help develop educational materials and other assets.

‘Power users’

Kucharski illustrates how those with rare diseases are becoming “the undisputed power users of health information online,” as National Public Radio calls them. The Pew Internet Project reported last year that people with rare diseases were far more likely than others to have sophisticated technology and social-media skills, which emerge from their quests to find others with similar medical challenges.

FMD Chat is not yet a full-time project for Kucharski, who edits a magazine in Western North Carolina. But she has ambitious dreams.

Among them: increasing awareness of FMD in the medical community through social media campaigns and one-on-one conversations.

She points to work on another rare disease that recently yielded a social-media driven academic research study – and hopes to find similar ways to organize FMD research.

It’s a model for how thousands of fellow North Carolinians also suffering from rare diseases might transform misfortune into opportunity by sharing their stories and helping accelerate research for improved treatments.

“Every single one of us can be an advocate,” Kucharski says. “Sharing our stories can raise awareness and might help doctors diagnosis us more quickly. We don’t always remember data, but we do remember stories.”

Christopher Gergen is founder of Bull City Forward & Queen City Forward, a fellow with Fuqua’s Center for the Advancement of Social Entrepreneurship at Duke University, and the author of “Life Entrepreneurs.” Stephen Martin, a director at the nonprofit Center for Creative Leadership, is author of the forthcoming book “The Messy Quest for Meaning” and blogs at www.messyquest.com. They can be reached at authors@bullcityforward.org and followed on Twitter through @cgergen.

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