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Advocating or Oversharing?

Finding a balance when sharing a rare disease story on social media.

Close up of friends texting on cell phones at table

When social media began to upend modern society a decade-and-a-half ago, the rare disease community wasn’t left out.

Before Facebook, Instagram, Twitter or Snapchat, people with rare conditions had fewer ways to reach out to people living with their same disease. Patients and advocacy groups also had smaller platforms through which to raise awareness and money needed for research.

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Today, many advocacy organizations offer social media toolkits and playbooks that offer ideas for hashtags and tips on how to run an effective online campaign for fundraising or awareness.

But a recent article in Hemaware, the National Hemophilia Foundation’s magazine, urged more caution with social media. There’s no guarantee of privacy when it comes to posting online, NHF Communications Director Beth Marshall noted. Her advice? Assume any potential employer will see what’s out there.

That advice is echoed by Gunnar Esiason, the son of CBS Sports analyst and former All-Pro NFL quarterback Boomer Esiason, who is living with cystic fibrosis (CF), a rare disease where a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs.

“There are kind of weird, sticky situations that people don’t think about when they’re going to put something on the internet,” he told Vita in a phone interview.

Esiason, 27, has been an icon in the CF community nearly his entire life. After being diagnosed at the age of 2 in 1993, he shared the cover of Sports Illustrated with his famous father to spotlight his fight against the disease. That same year, The Boomer Esiason Foundation was launched to raise money and awareness for CF. Esiason has followed his parents’ lead and become a vocal advocate by maintaining a popular blog and podcast about the condition. But he’s quick to note that his parents have been “very cognizant” of his “personal medical security.” He says he’s seen parents share information such as x-rays and lab results, which he believes could lead to negative repercussions for the child.

“Unfortunately we do live in a world where there is genetic discrimination,” he says. “I think oversharing medical files, medical documents, putting pictures of a kid in the hospital, attaching a child’s name to a disease can lead to genetic discrimination many years down the line.”

Gunnar Esiason

Gunnar Esiason (Photo/ Boomer Esiason Foundation)

That discrimination, he says, could take the form of a lost job opportunity or a potential college scholarship for an athlete.

He puts it this way: “If you’re looking at a college recruiting situation where a kid is going to play ice hockey and a coach is coming down to a decision between Person A with cystic fibrosis and Person B who’s totally healthy but has the same exact skill set, which one is that coach going to take?”

There’s also the issue of personal identity, says Baylee Gregory. The 19-year-old college sophomore living with common variable immunodeficiency disease tells Vita one of the reasons she rarely posts about her medical condition is because she’s not looking to be known simply as  a person with a rare disease.

“I don’t want that to be the first impression that people have of me,” Baylee says.

Baylee Gregory

Baylee Gregory

Still, there is value she says in being open about her disease, especially to help people who are newly diagnosed and may have the same questions she did when she learned of her condition as a teenager.

“I feel like if I was posting more about it there’s people who were diagnosed at the same age I was now, it could give them a more real-life picture,” Baylee says. But she adds that such posts may be better suited for an advocacy-themed account, not her personal one.

For all the drawbacks of social media, Esiason has been able to use it to build a following for his blog, podcast and the Boomer Esiason Foundation. If a balance can be found between maintaining privacy and advocating, the rewards of spreading the word about rare diseases and connecting to others can be worth it in the end.

“The positive side of this is we do have a conduit and vehicle to be heard,” Esiason says.