A rare disease left Kim McClellan unable to speak since birth. Now she’s using her newfound voice to make up for lost time.
Four and a half years ago, Kim McClellan’s son heard his mother’s voice for the first time. He was 30 years old. “Something as simple as reading a book to my children, I was never able to do that,” she recalls. At 54, after over 250 surgeries, McClellan had finally found her voice: “When I woke up from surgery, I told God, This voice you’ve finally given me is yours to use in any way you see fit.”
McClellan was born in 1966, and although she developed typically during her infancy and toddlerhood, her parents noticed she wasn’t speaking like other kids her age. At first, pediatricians told them she might be suffering from laryngitis. Then, her parents were told it might be a long-lasting respiratory infection. Some doctors even accused McClellan of refusing to speak, for attention. Then in 1971, when McClellan was five, she woke up unable to breathe. “My parents took me to the ER, and there happened to be a doctor from San Francisco who had seen a case like mine before,” says McClellan. Her family was finally given a diagnosis: recurrent respiratory papillomatosis, or RRP.
According to the Recurrent Respiratory Papillomatosis Foundation, where McClellan is now president, RRP is “a rare disease characterized by the growth of tumors in the respiratory tract caused by the human papilloma virus (HPV).” Although HPV is often benign, when the strain that causes RRP is passed from mother to child during birth, it persists in the child’s tissue and causes tumor recurrences even when the growths are surgically removed.
There’s currently no cure for RRP, although since McClellan’s diagnosis, there’s a much greater understanding of the disease and appropriate interventions. We now know the trauma that repeated surgeries can have on a child, but in the 1970s, McClellan would undergo surgery as frequently as every 7 to 10 days. She has few specific memories of her childhood stints in and out of the hospital, but the trauma has stayed with her: “None of us are wired to have surgeries over and over again,” she says. “We’re not created for that.” (McClellan does have one memory from age eight when she got so frustrated at being back in the ER that she slapped a nurse.)
I was a little girl with no friends.
Growing up with a voice that was often no louder than a whisper is a terrible burden for a child to bear. “On the playground, I couldn’t shout over the noise,” she says. “I couldn’t run around with the other kids because I couldn’t breathe.” Instead of playing outside with the other kids at recess, McClellan would stay in the classroom with her teachers and do extra work. “People just assumed I was standoffish because after a while, I just stopped trying to engage,” she says. “I’d watch the other kids join cheerleading or play red rover, and then I’d be out of school for weeks, for surgeries. There was definitely a lot of envy and bitterness when I was growing up… I was a little girl with no friends.”
It wasn’t until almost two decades after McClellan’s initial diagnosis that the medical community made the connection between RRP and the sexually transmitted infection HPV. Although around 90 percent of women will have HPV at some point in their life, McClellan says she’s noticed an immense amount of shame among mothers of children with RRP: “It’s really difficult for a mother to learn her child is sick because of something that came from her,” says McClellan. “I cannot imagine how my mother felt when they finally figured out in the early 90s that this was caused by HPV. She completely blamed herself — there was so much guilt.”
In the mid-2000s, an HPV vaccine became widely available in the US. Hypothetically, this meant that women would be protected from HPV, and wouldn’t pass the virus to their children. But McClellan, who lives in the South, says getting parents to vaccinate their kids for HPV has been an uphill battle: “Even seeing my condition, some of my family members have refused to vaccinate their children,” says McClellan. “In the South, there’s a purity culture that’s alive and well. Parents really believe that their child will remain a virgin until marriage, so they’ll never be exposed to HPV. But as we all know, that’s not always what happens.”
“I’ll never understand how people can refuse the vaccination,” says McClellan. “People get cancer, and they’re OK with getting chemo, which can be extremely dangerous. But vaccinations save lives. I just don’t understand how anyone can be against that.”
As years passed without a cure for RRP, McClellan decided to speak up about the disease. She joined the ranks of the RRPF, a foundation that supports families dealing with RRP and raises funds to help eradicate the disease, and became president in 2021.
Through the organization, McClellan unites parents, patients, researchers and industry partners together to work toward meaningful change. In particular, she feels a special emotional connection with mothers of children born with RRP. Since the disease is now entirely preventable through vaccination, one might think McClellan would resent the parents of young children struggling with the same disease she battled for decades. But McClellan feels no judgment towards these mothers: “No one would wish this upon their child,” she says. “I don’t know that parent’s story. I don’t know how they were raised. Maybe they didn’t have access to immunizations. Maybe they couldn’t afford them or didn’t have the education. My goal is to help them cope, and to change outcomes for the future.”
Like any foundation working to improve the lives of the patient community through advancing research towards treatments and cures, one of the biggest hurdles RRPF comes up against is funding. That’s why they were elated to receive a grant from the Chan Zuckerberg Initiative’s Rare As One project. The grant provides resources, tools, and funding for patient-led organizations devoted to accelerating the science to eradicate rare diseases. “The grant has been a lifesaver for us,” says McClellan. “It allowed us to fund the creation of a new assay test to detect HPV 6 or 11, the two strains that cause RRP.” They’re also using the grant money to publish a consensus on best practices for pulmonary patients with the disease, so hopefully, no other child will have to undergo hundreds of surgeries as McClellan did.
“I still live in fear that the voice I’ve finally been given will go away,” says McClellan. “One surgery can scar your larynx for life, so if we lower the surgery count, even if that’s not a cure, it’s a win for our community. That’s what we’re fighting for — and my dream is that someday, I’m no longer needed in this fight.”
