In the early 2010s, something new was happening online: People living with chronic conditions were sharing their stories on personal blogs and Facebook pages. Social media was still in its infancy. Yet these posts seemed to strike a chord, racking up multiple likes and comments and giving rise to digital communities with thousands of followers.
Caroline Pavis, who at the time was working as a communications leader for the U.S. Immunology business at Johnson & Johnson, remembers being touched by the power of their experiences. “These patient advocates were the go-to people for advice and insight, benefiting so many others online who experienced the same symptoms or illness,” she recalls.
Pavis’ next thought: “What would happen if we brought all these folks together in person?”
Building a community in real life could help alleviate the feelings of isolation that are often part of having a chronic health condition, especially a rare one. It could help advocates spread awareness about the challenges they faced. And it would give Johnson & Johnson colleagues a valuable opportunity to learn how to better support them.
When we first created HealtheVoices, no other healthcare company was doing anything like this. And here we are approaching our 10-year anniversary, and that’s still the case.
Pavis and her team invited 60 advocates from different online health communities, including people living with Crohn’s disease, rheumatoid arthritis, heart disease, HIV, mental health conditions and cancer, to a groundbreaking two-day conference in New Jersey that the team named HealtheVoices.
HealtheVoices turned out to be such a success, the program expanded to include online events throughout the year, and the conference became an annual gathering—one that is celebrating its tenth anniversary this year. Over the past decade, more than 1,200 patients, caregivers and healthcare providers from 19 countries have participated in both in-person and virtual engagements with the HealtheVoices community. Attendees represent more than 100 health communities, including some focusing on conditions so rare, only a handful of individuals have been diagnosed with them.
“Unlike those with more well-known diseases like breast cancer or heart disease, individuals living or caring for someone with a rare disease often struggle to connect with others who have had similar feelings or experiences,” says Pavis, who is now Head of Communications for Johnson & Johnson’s Technical Operations and Risk organization. “Through HealtheVoices, rare disease advocates have the opportunity to not only connect within their specific health communities, but also to discover shared experiences with peers across diverse health backgrounds.”
Johnson & Johnson continues to invest in and support the program because of the value it brings to patient communities and the insights it brings to company business leaders. “When we first created HealtheVoices, no other healthcare company was doing anything like this,” says Pavis. “And here we are approaching our 10-year anniversary, and that’s still the case.”
HealtheVoices wouldn’t have the impact it does without the input and dedication of so many patients and caregivers sharing with others in the digital space. Here, three social media advocates—who are among the more than 300 million people around the world affected by one of more than 7,000 rare diseases—explain what the in-person conference means to them as they navigate life with a rare disease.
“For the first time, I was in a room full of people who understood”
Sam Seavey, living with Stargardt disease
Growing up in North Carolina, Sam Seavey didn’t know any blind kids other than himself and his older sister. Both were diagnosed in childhood with Stargardt disease, a rare genetic condition that affects the retina and leads to vision loss, usually by adulthood.
Seavey’s lack of sight felt like a barrier between him and the rest of the world. The advent of social media changed things for the better. When Seavey couldn’t find much information online about Stargardt disease, he started his own YouTube channel, The Blind Life, in 2013.
“There hasn’t been great representation in media for the blind,” Seavey says. “It’s always dark glasses, can’t do anything, stumbling around, Mr. Magoo. I think people with vision loss wanted an accurate, positive representation to give them hope.”
Seavey grew The Blind Life into one of the biggest vision-impairment channels online. Over 60,000 subscribers watch him review assistive devices and offer tips for living with vision loss. But he credits HealtheVoices with elevating his content and expanding his community. HealtheVoices “made other attendees aware of the blindness and low vision world,” says Seavey. “That’s the best thing that could have happened.”
While presenting at HealtheVoices in 2022, Seavey was blown away by the applause and support he received. “I’m usually talking to business professionals or people in the blind or low vision community or people who work with our community. That was the first time I’d been in front of a room of people who were my peers,” he says. “They know what it’s like to live with a health difference and understood how difficult it can be.”
Seavey returned to HealtheVoices last year; he’s also served on its advisory board. Although he used to consider himself a YouTube influencer, HealtheVoices has encouraged him to think of himself as a social media health advocate. “That’s someone who’s here for the community, here for the people,” says Seavey. “And that’s what I’m doing.”
“HealtheVoices amplifies my voice as an advocate”
Sophia Esteves, living with pulmonary arterial hypertension
In 2001, Sophia Esteves, a single mom of a 5-year-old daughter, was juggling two jobs and college classes when she was diagnosed with pulmonary arterial hypertension (PAH), a dangerous type of high blood pressure that severely disrupts blood flow through the heart and lungs. The cause of PAH isn’t clear, but scientists say it’s triggered by physiological changes. About 1% of people around the world have PAH, and there is no cure, according to the National Institutes of Health.
In the hospital, a doctor predicted that Esteves had four years to live. “She said, ‘I need you to find somebody to raise your daughter,’” recalls Esteves. “‘I need you to make a will. And I need you to stop working and go on disability because your new job is trying to stay alive.’”
Esteves followed the doctor’s advice. But after what she remembers as “365 days of crying,” she came to a realization. “I was here and I had to make the most of the time that I had,” Esteves says. “It gave me this charge to move forward.”
Esteves began an in-person PAH support group in her hometown of San Antonio, then began sharing her experiences on Instagram as The PH Warrior. Her authentic take on life with a fatal disease has earned her over 2,000 followers worldwide. “I try to show them that they can still carry on and have some version of their life that maybe wasn’t the same, but still looks pretty good,” she says.
When Esteves was invited to attend HealtheVoices in 2019, she quickly learned that the event was all about people. Says Esteves: “I met some truly sincere, transparent and unconditional humans. HealtheVoices gives you a feeling that you matter, and it gave so much more purpose to what I had already been doing.”
HealtheVoices helps connect Esteves to other patient advocates who feel the same way. They’ve built close friendships, collaborated on social media and interviewed each other on podcasts. Together, they’re amplifying their voices.
Twenty-three years after her diagnosis, Esteves continues to defy doctors’ expectations. And she gives credit to HealtheVoices for expanding her ability to be “that voice for others—or a light when there isn’t one.”
“There’s a difference from where I started in this journey to where I am now”
Yolanda Brunson-Sarrabo, living with multiple myeloma
In 2008 Yolanda Brunson-Sarrabo was working in the fashion industry in New York when routine bloodwork came back with abnormal results. In her mid-thirties, she was diagnosed with smoldering multiple myeloma (SMM), a blood and bone marrow disorder that can develop into the rare cancer known as multiple myeloma (MM). Five years later, doctors told her the condition had progressed to MM.
She had an endless list of questions: What should she look for in an oncologist? What did “watch and wait” mean? How would medication affect her ability to have children? But she wasn’t sure where to turn or who to ask. In the days before social media, “nobody was talking,” she says.
So Brunson-Sarrabo decided that she would talk. In 2012, she built a following as Myeloma Chick on Instagram, posting reassuring and practical advice for others living with this treatable yet uncurable cancer. She also launched a podcast, No Better Time Than the Present, where she interviews healthcare providers and patient advocates—most from the MM community, but also people representing other health spaces, including lupus, sickle cell disease, HIV and other types of cancer.
At her first HealtheVoices in 2019, “it was eye-opening to meet other advocates,” says Brunson-Sarrabo. “Learning more about the patient experience and what other advocates were working toward was something I wasn’t used to.”
Honing her skills as a patient advocate has given Brunson-Sarrabo the confidence to better advocate for herself. She feels equipped now to ask her doctors questions or state her concerns. “Not that I wasn’t doing that before, but there’s a difference from where I started in this journey to where I am now,” she says.
Brunson-Sarrabo, who lives in Pennsylvania, also attended last year’s HealtheVoices conference. Throughout the event, she posted social media updates and conducted new podcast interviews with other participants, showcasing the conference to her followers. “This is my way to give back,” she says. Brunson-Sarrabo also uses her social media influence to raise awareness of her rare disease throughout the year, including milestones like Myeloma Action Month each March.
