In 2011, I barely knew about social media and certainly wasn’t doing it. So while I heard bits about the young Ottawa woman who desperately needed a lung transplant and was tweeting about it, I didn’t really follow her story.
Still, it was hard to miss. Hélène Campbell, then 20, became a media sensation across traditional and social media channels with her runaway Twitter campaign to raise awareness about organ donation. She blogged, she was on Facebook, she posted photos on Flickr — she was everywhere. But remarkably, the messages she circulated weren’t all about her (though the blog site welcomed donations to offset living expenses during her lengthy care and treatment away from home).
Hélène had idiopathic pulmonary fibrosis, a condition that impacted breathing, stamina and more, and it was getting worse. When she had to relocate to Toronto with her mom and wait for the transplant that could change everything, she delighted followers around the globe with her effervescent personality and endless optimism. Her online postings were a way to keep family and friends back home updated and close, but she went beyond that. Hélène used her energy and communication skills to underline the huge need for more organ donors, and to encourage others she had met who were also facing enormous health challenges. She made her journey personal, talking breezily about what it was like to wait for an organ donation. She described vividly the precarious limbo that was her day-to-day world, where she had to keep spirits high and stay as well and fit as possible, no matter how she felt physically.
Friends in high places
Hélène and her cause captivated people, including celebrities like Justin Bieber and Ellen DeGeneres.
After the Biebster tweeted his support, online registrations for organ donation increased 600% almost immediately. Ellen became another champion, staying in contact and then having Hélène on her television show to talk about the campaign and her condition — just months before the 2012 double lung transplant that would save her life.
Hélène’s blog details the phenomenal growth in followers, supporters and other acts of kindness that ensued. Another website, www.beadonor.ca, noted that in three weeks Hélène boosted that tool’s average registration rate for organ donation by 500%. About her efforts to get Justin Bieber’s endorsement, Hélène triumphantly blogged in early 2012: “Guys, we did it. As a team, we used social media, put it into use and for a good cause.”
I guess it’s a bit weird to be just catching up on all of this in 2016, long after most of the action took place. The thing is, I initially looked up www.alungstory.ca to get some background and refresh my memory. Then I got hooked, and couldn’t stop reading. Even when I knew how it turned out!
Hélène had touched my heart. I couldn’t get enough of her we-can-do-it outlook on life. When I learned that she’s still working to help others, long after her health has improved and she’s getting on with life, my admiration grew. In 2015 she became a spokesperson for the Toronto-based Give2Live campaign, an effort to raise funds for those who
must live away from home while having extended medical treatment. The website states that expenses are estimated at $10,000 in out-of-pocket expenses while waiting for an organ transplant.
I can’t help wondering what Hélène thinks of the social media maelstrom that ensued during the recent presidential campaign in the United States. What would she have to say about the hatred and venom spewing – particularly on social channels – from the Republican party campaign and its legions of supporters?
When I looked for a more current example of social media doing good in the health-care world, here’s what I found.
On her Facebook page, a young Brandon, Man., woman issued a plea in October seeking help for her mother, who had been hospitalized due to severe abdominal pain that left her unable to eat. The woman suffers from celiac artery compression syndrome, a rare medical condition, and her daughter’s post quickly brought an offer for a needed surgical consult that wasn’t available locally.
Now this is a social media story I can support, I thought! Sadly, the consultation with the specialist has not brought answers or relief, to date, but the fact that the daughter’s post was widely shared surely opened the case to a wider audience and expanded the medical possibilities.
These stories have encouraged me that social media does have a brighter side, so now I’m on the lookout for more examples where it has made a difference — especially in health care. Stay tuned!