14 Health Heroes Who Are Changing Healthcare As We Know It
Photo: Winnie Au
The Can-Do Donor
DePanfilis was shocked at how simple “getting on there” turned out to be: All she had to do was sign up and swab her cheek. It was unlikely that she’d be this patient’s bone marrow soul mate, but maybe she could help someone else. She just didn’t imagine she’d get the chance so quickly. Not long after being swabbed, DePanfilis got a call about a potential recipient: a 6-month-old boy born without an immune system—meaning one cold could become life-threatening pneumonia. Within six months, she was checked in to the hospital as his anonymous transplant donor.
For the procedure, done under general anesthesia, doctors used a needle to withdraw marrow from DePanfilis’s pelvic bone. She was told the median recovery time is 20 days and can include muscle pain and fatigue, but she had only some soreness. “Honestly, the next day, I went out shopping,” she says. The boy who received her bone marrow cells is now thriving and able to run around the playground like other kids.
DePanfilis was so energized by the experience that she started volunteering at registry events, and last year she launched her own at Norwalk Hospital. “One couple drove 45 minutes just to get swabbed,” she says. In a single day, approximately 50 potential donors signed up—more than twice the average for one of these events—and swab kits were given to at least 30 more. Every year there are 20,000 people who might benefit from a bone marrow or umbilical cord blood transplant, according to the Department of Health and Human Services, so the more potential donors, the better—especially when you consider that 70 percent of patients who require a transplant need to look beyond their family for a donor. “When you say ‘needle’ and ‘pelvic area,’ people get nervous,” DePanfilis says. “But I want everyone to know how easy giving this gift can be.”
Photo: Courtesy of Grace Bandow
The Skin Saver
Photo: Courtesy of subjects
The Baby Cuddlers
Now, on top of holding infants for three hours a week (Fitzgerald was recently recognized by President Obama for putting in 4,000 hours at the hospital), the retired psychologists help lead the cuddlers training program and educate attending interns about TLC in the NICU. Thanks in part to their dedication, the cuddling program has become so popular that it has a year-long waiting list. “I remember a baby who weighed just a pound and a half who was in the NICU for three months. I’d hold her every time we went in,” says Fitzgerald. “Eight years later, we were at a soccer field watching one of our grandchildren when the coach said, ‘I’d like to introduce you to my daughter.’ This beautiful child with flowing blonde hair came over to us and said, ‘Can I hug you? My daddy and mommy said you used to hug me when I was little.’”
Photo: Courtesy of Samantha Peterson
The Shape Shifter
Peterson’s spine curved 42 degrees and was getting worse even though she wore a back brace 24/7. Four orthopedic surgeons were baffled; eventually, she was diagnosed with Ehlers-Danlos syndrome, a genetic disorder affecting connective tissue. She required surgery that involved two 18-inch rods, 17 screws, and a bone graft fusing 15 of her vertebrae.
At age 15, Peterson started learning how to move again—no twisting, lots of squatting. And once she began to feel better, she was inspired to start Shift Scoliosis, a nonprofit that provides resources for scoliosis patients: “I wanted to help make life better for kids like me.” Initially she focused on donating blankets to post-op children in developing countries, but one day she heard from a hospital that was turning away the gifts; its patients’ conditions had been diagnosed at such an advanced stage that doctors were sending children home, saying there was nothing they could do. So Peterson set her sights on a new dream: to initiate mass scoliosis screenings.
To date, Shift has helped screen more than 4,000 American children, and that number could soon skyrocket. This year Peterson will beta test a medical device she helped develop to detect scoliosis in school-age kids earlier than ever before. For her work, Peterson was recently recognized by Points of Light, the world’s largest organization dedicated to volunteer service. Go to pointsoflight.org/o-magazine to learn more about Peterson and maybe even find ways that you, too, can be a changemaker.
Photo: Winnie Au
To that end, she’s partnered with NYU Langone Medical Center to inform black women about the importance of early detection and treatment. As part of the Beatrice W. Welters Breast Health Outreach and Navigation Program, local healthcare helpers, called patient navigators, spread the gospel of mammograms in churches, salons, and gyms. They also arrange transportation and childcare so women can see doctors. This year’s aim is to reach 5,000 women and facilitate 2,000 screenings in Brooklyn, then expand to Harlem. “Breast cancer is an overwhelming experience,” says Welters. “We want to hold women’s hands through the entire process.”
Photo: Cody Pickens
The Radical Researcher
Photo: Courtesy of Husseini K. Manji
The Depression Slayer
Photos: Courtesy of subjects
The Risk Takers
Photo: Courtesy of Carol Head
The Tireless Advocate
Photo: Winnie Au
The Accidental Activist
Kantayya, a Brooklyn actor and author, posted a rant on Petition2Congress.com, a site that sends letters to lawmakers, and shared it on social media. So did her friends, and their friends, and friends of friends—until 80,000 people had forwarded letters to Congress. Then a group of senators, including Elizabeth Warren and Bernie Sanders, wrote their own stern letter to Mylan CEO Heather Bresch, calling the product “exorbitantly expensive” and noting a 670 percent increase in her total annual compensation since 2007. The next week, a Senate subcommittee announced plans to investigate Mylan’s EpiPen pricing. “I had no idea it would take off like this,” says Kantayya. “But I’m so glad it did, because something needed to happen.”
Photo: Eli Meir Kaplan
The Wellness Evangelist
Photo: Ashley Woo
The Poet of Living and Dying