Social Media-Maybe it’s Not as Bad as I Thought
When it comes to social media, I now believe you have to take the bad with the good. As I have written in the past, there are so many ‘evils’ to the constant posting and the dangers of taking everything you read as truth. However, I have come to appreciate just how much can be accomplished in just 140 characters or less.
Take Tess Bigelow, an adorable six year old girl, who was found to have a rare mutation in the USP7 gene. As there are only 7 others in the world known to have this mutation, which causes severe developmental delays and skeletal problems, there still is no clear understanding of the disease and how to treat its symptoms. Tess’ parents set up a website dedicated to “help us find others like Tess” and shared it on Twitter and Facebook. Within 24 hours, researchers at Baylor College of Medicine had gotten a hold of the Bigelows and now Tess is included in their lab’s research endeavors. Baylor even asked the Bigelows to continue to use social media to seek out other families and has already located two more kids with a mutation.
And then there is Eye on Ayelet, the social media platform that was created by little Ayelet Galena’s parents when she was battling a rare blood disorder. Ayelet’s only hope for survival was to have a successful bone marrow transplant and a donor was needed. In recounting their story in a local Jewish magazine, Ayelet’s dad wrote, “When we checked the registry, there were no perfect matches in the system. We needed to search. And the best way to do that was to go public. Publish our pain.” With the help of Gift of Life and the Galenas’ relentless search for a match, thousands of potential donors swabbed their cheeks in hope that they might be able to be a match. Though I can’t find a recent statistic, I read that as of 2013, 60 matches within this registry have been made through donors who had registered because of Ayelet.
Aside from using social media to seek out treatment, I have personally found social media to be helpful in supporting those with medical conditions. I recently joined a Facebook group for mothers of kids with the birth defect club foot (which my son had at birth). There are daily posts asking for advice about how to speak with doctors, questions about products to recommend, and photos asking the other moms “is this normal?” I find this group to be extremely helpful and wish I had known about it when my son had started his journey. Like Clubfoot Mammas, there are thousands of similar groups dedicated to just about every condition you can think of.
And finally, when recruiting participants for our BRCAcommunity initative, offering subsidized BRCA testing for Ashkenazi Jews without significant family histories of BRCA-related cancers, we have found that one of the most common sources of enrollment has been through word of mouth, mostly through social media. Imagine how many people would not have had access to the testing they wanted had social media not existed!
So next time you are scrolling through your college roommate’s honeymoon pictures, try to pay close attention to the less exciting stuff that may pop up. Who knows? Maybe you can help save someone’s life along the way-or at least learn something new!