Finding social media’s brighter side

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.

A media sensationhelene_on_twitter_screencapture

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!

Still giving…

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

give2live_fb_screencapture

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?

 

Wanting more

When I looked for a more current example of social media doing good in the health-care world, here’s what I found.

finding_surgeon_through_social_mediaOn 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!

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One thought on “Finding social media’s brighter side

  1. One more good news story to add: A friend of mine was born without a septum dividing the two halves of her heart and was not expected to live past the age of 2. At 40, she was told by one set of heart experts in Ottawa that she should tidy her affairs. Another set of doctors – a collaboration of MDs in Toronto with international backgrounds – convinced her to get stents put into lungs to open up her airway. A year or so later, they talked her into a complicated surgery that would build her a new heart wall and – potentially – a new lease on life. She would need someone with her to support her through the surgery and recovery and her sister jumped aboard. My friend needed a small sum (under $3,000) to cover her sister’s wages, accommodation and travel for the hospitalization period, for which she made an appeal. The money was raised in a matter of two or three days! This lovely, talented, artistic joyful woman recently complete a 5K run and continues to take on new challenges every single day.

    Thanks for sharing these modern miracles – medical and social media!

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