How to Protect Your Family When Sharing Your Medical Journey Online

By: Jackie Miller, Esme’s Mom

Esme, our 10-year-old daughter, had a deep bruise on her arm that just wouldn’t heal. As a practicing emergency medicine physician, I knew it was something that needed to be seen. And fast.

Tests confirmed what my instincts already knew to be true: Esme had an aggressive bone cancer called osteosarcoma.

On the day of Esme’s diagnosis, December 11, 2013, Esme’s dad posted a photo of her to his Facebook page. It was a blurry iPhone photo of Esme in the doctor’s office and the caption read, “This is where the journey begins.”

Esme Tweet from Saudi Arabia

We were blown away by the outpouring of support that resulted from that single social media post. Seeing just how many people were interested in providing encouragement for our daughter inspired us to create a personal blog Facebook page named Team Esme.

The Team Esme Facebook page gave us a community of people who met us with prayer and support for the bad news, and cheers for the good. We no longer felt alone.

We quickly learned what a powerful tool social media can be for families dealing with a challenging medical diagnosis.

Unfortunately, our family also learned that it can make you feel vulnerable and exposed if your information falls into the wrong hands.

Esme Original Tweet from Saudi Arabia
In a story that’s stranger than fiction, Esme became the victim of an elaborate hoax that unfolded halfway around the world in Saudi Arabia. Some of the photos we posted to the Team Esme page—the same photos that ignited conversation that boosted our child’s confidence on the darkest days—were lifted from our page and used to raise money for a nonexistent charity.

Esme Mom Update

Our precious girl had been given a fake name (Sara Ibrahim) and a fake story to raise money for a fake charity. More than 75,000 people followed “Sara” on Twitter, and she even became a trending hashtag. Hundreds of people believed they had donated their hard-earned money to support a family in need, and that money found its way into the hands of criminals. BuzzFeed even wrote a story about it.

Esme Tweet from Saudi Arabia

And all the while, Esme was fighting for her life.

Unfortunately, our story is not one-of-a-kind. It only takes a quick Google search to see that many other photos of seriously ill patients have fallen into the wrong hands and been used to start fictional fundraisers on crowdfunding sites such as GoFundMe.

Today, I am so blessed to say that Esme has no evidence of disease. Our girl beat cancer!

Esme Facebook Last Chemo

As we begin to move forward with our lives, we often field questions from families on journeys similar to ours.

Do we regret starting the Team Esme page?

Would we caution other families, particularly those facing a new diagnosis, to not share their story on social media?

This may surprise you, but my answer to both of those questions is no. For us, the emotional benefits afforded by the page outweighed the negative.

That said, there are definitely things I wish we had done differently from the get-go.

Here are some tips we learned from our experience and the information security team at Children’s Healthcare of Atlanta:
  • Double-check the page’s privacy settings. Creating a private page—a page that requires members to be approved before joining—is the easiest way to protect your child’s online identity. Keep in mind that even posts set to private settings have the potential to be captured as a screenshot and shared in places beyond your control. 
  • Use an app that allows you to place words and symbols on photos to brand them as unique to your page. Here’s an example of how we used this tactic.
  • Never disclose your location and remove geotagging from all photos. Many smartphones automatically geotag photos by default. Photos that are geotagged are embedded with coding that contains the latitudinal and longitudinal coordinates for where the image was captured. You can find step-by-step instructions to disable geotagging on your smartphone by searching online for the name of your device (e.g. iPhone or Android) and “how to disable geotagging.”
  • Be selective about the photos you share. Be mindful to not show ID bands, medical charts or white boards that contain information such as date of birth, legal name or record numbers.
  • Only follow and accept friend requests from people you trust.
  • Setup Google alerts for your child’s name and condition to receive real-time updates via email when other people post something about your child’s story on the web.
  • Keep all health-related updates as brief as possible. The less detail, the better.

If you decide to share your child’s journey on social media, remember that every word, every photo and every detail you share has the potential to be used in ways entirely outside of your control.