by Elisabeth Coon, Student Public Relations Writer
After spending nearly four years fighting a disease many doctors could not diagnose and insurers would not cover, Cedarville University student Sam Sofio found himself addressing federal health leaders about the realities of living with Lyme disease — transforming years of private suffering into public advocacy at a U.S. Department of Health and Human Services roundtable.
For 1,400 days, Sofio measured progress in small steps: short walks that often ended early, sleepless nights broken by pain and fear and doctor visits that led to more questions than answers. However, on December 15, 2025, he measured progress in something else entirely — minutes at a microphone inside the Herbert H. Humphrey Building in Washington, D.C., sharing his story of living with Lyme disease during the U.S. Department of Health and Human Services (HHS) Lyme Disease Roundtable.
Sofio, a junior professional writing and information design major at Cedarville University, traveled to Washington to speak during the roundtable hosted by HHS Secretary Robert F. Kennedy, Jr. — a sharp contrast to the days he spent confined in his parents’ home, unsure if he would ever regain his health.
Life Interrupted by Illness
Before Lyme disease, Sofio lived an active life and planned to attend a Christian university after his high school graduation. But a few days before he was scheduled to begin classes in 2020, his health began to decline, worsening throughout that fall and into 2021. Once able to run across soccer fields, Sofio soon struggled to walk, breathe deeply and sleep through the night.
“There were many nights when I was jolted awake, convinced I was going to die," said Sofio. “I had air hunger, chest pressure and pain throughout my body.”
After years of medical appointments and inconclusive testing, Sofio received a clinical diagnosis of Lyme disease in October 2021 from a provider who specializes in tick-borne illnesses. Like many others with Lyme disease, he never tested positive on a standard Lyme test. As a result, he and his parents paid thousands of dollars out of pocket instead of navigating a medical system that questioned the legitimacy of his illness.
With a diagnosis and a medical treatment plan, Sofio was stable enough to attend Cedarville University in August 2024.
The Call That Changed Everything
In the fall of 2025, a phone call changed everything. Someone familiar with Sofio’s story connected him with organizers at the Department of Health and Human Services, which was planning the Lyme disease roundtable to address the gaps in diagnosis, treatment and patient care. With the aim of bringing together federal officials and patients, Sofio was invited to represent voices that often go unheard.
“I never imagined something like this would come from years of being sick,” Sofio said. “It felt like a chance to speak for people who are still struggling.”
On the National Stage
The roundtable convened in Washington, D.C. As Sofio entered the room, he recognized the names of Lyme disease organizations he and his mother had searched online during moments of desperation. Sitting alongside federal official and advocates, Sofio shared his account of living with Lyme disease during the broadcast. He spoke not in analytics but in lived experiences — years of uncertainty, financial strain and being overlooked by the medical system.
He called for insurance coverage for Lyme-related care, saying that many patients are forced to pay out of pocket for diagnosis and treatment. He emphasized the need for accurate, affordable diagnostic tools and increased research to identify standardized, effective treatment.
For Sofio, being heard carried deep emotional weight. “After years of suffering and asking ‘why,’ to finally sit there and speak, it meant everything,” he said.
Why His Voice Mattered
For Sofio, the microphone in Washington represented more than a speaking opportunity. It marked the distance between years of illness and who he is today: a thriving college student and a voice for patients still waiting for answers. What once felt like lost time has since become part of a larger purpose.
“There were so many moments when I asked God, ‘Why?’” Sofio said. “Looking back now, I can see how He was still working, even when everything felt broken.”
About Cedarville University
Cedarville University, an evangelical Christian institution in southwest Ohio, offers undergraduate and graduate residential and online programs across arts, sciences and professional fields. With 7,265 students, it is among Ohio's largest private universities and is ranked among the nation’s top five evangelical universities in the Wall Street Journal’s 2026 Best Colleges in the U.S. Cedarville is also known for its vibrant Christian community, challenging academics and high graduation and retention rates. Learn more at cedarville.edu.
