Facebook may have helped save the life of a young boy afflicted with a mysterious ailment, showing how the social network has become a support system for those dealing with illness.
Is This Thing On?, or ITTO, is our Wednesday column showing how everyday people use technology in unexpected ways.
Deborah Kogan’s four-year-old son had persistent fever and swelling, which his pediatrician had trouble diagnosing and treating. She documented her ordeal of escalating worry, useless antibiotics for an infection he didn’t have, revolving diagnoses, and a nagging mother’s intuition using quick smartphone pics and status updates to her Facebook page.
A few days later, when the pictures and captions turned more worrisome and a diagnosis still proved elusive, several Facebook friends offered support and advice.
A former neighbor, who was following the boy’s progression on Facebook, called Kogan and alerted her to the possibility that her son may be suffering from Kawasaki disease, a rare and sometimes fatal auto-immune disorder that attacks the coronary arteries surrounding the heart. The neighbor’s son was struck by the illness a few years earlier.
The next day, amongst the 36 messages of possible causes and words of support were messages from a cousin and a friend, both pediatricians, echoing the neighbor’s concern. They cautioned serious damage for Kawasaki disease begins as early as five days after the onset; at this point, the little boy was well into day three.
Because of her Facebook friends’ persistence, Kogan’s child was finally diagnosed and treated for Kawasaki disease and is now recovering.
Kogan initially wondered if updating her son’s medical malady might have been “some subconscious part of me wondering whether one of my hundreds of ‘friends’ might be privy to some expertise on the befuddling… syndrome that had my child in its grips.”
As a result of Kogan’s postings, social media became her son’s “inadvertent lifesaver,” as well as her most valuable tool to keep family and friends updated on his changing condition during treatment.
Kogan said the social media helped her know she wasn’t alone and, she said, “feel profoundly connected to the human race while living, breathing, eating and sleeping in the isolating, fluorescent-lit bubble of a children’s hospital ward.”
This mother’s account of how Facebook saved her young son grabbed headlines and was a hot topic around office water coolers and sidelines at Little League games. But it also reflects a growing reality, according to a new report by Minneapolis marketing firm Russell Herder, which found online tools like social media are able to offer new ways of connecting to and supporting patients.
The report, called “Seeking Social Solace: How Patients Use Social Media to Disclose Medical Diagnosis Online,” found that people go online with their diagnoses to seek emotional support from family, friends and others who have similar conditions. And, more than half of the newly diagnosed find comfort reading blogs, 30 percent with message boards, and nearly 15 percent on Facebook and Twitter.
Most of this searching is patient-initiated, with the individual patient trying to make sense of a diagnosis and build a support system by searching online. Armed with this information, healthcare organizations now embrace the opportunity to coordinate more patient-oriented and effective care.
“There’s real value to the patient to be able to provide more effective emotional support platforms,” said Brian Herder, executive creative director of Russell Herder. “So we’re saying there is an opportunity to begin to offer emotional support immediately upon diagnosis, as opposed to further on in the treatment process.”
For example, last year the venerable Mayo Clinic launched its Center for Social Media, and earlier this month extended its reach around the world. The site, which is free and open to anyone, features content from Mayo’s YouTube channel, links to news stories about medical advances, and a forum for patients with similar conditions to contact each other.
Just as social media is providing a way to express the joys and often mundane elements of everyday life, its role helping patients navigate more turbulent times is expanding, too.