Meet Levi Peterson

ABOUT ME

Levi Peterson is a 31-year-old survivor, patient advocate, and writer whose life has been defined by resilience in the face of extraordinary medical adversity. Diagnosed with rare neurological and autoimmune conditions—including Idiopathic Intracranial Hypertension (IIH), Behçet’s Disease, and early-onset Parkinson’s—Levi has endured eleven brain surgeries, multiple life-threatening complications, and countless procedures, all while navigating a healthcare system often unprepared for complex, rare disease journeys. Once a promising firefighter and paramedic, Levi’s life took a dramatic turn when a routine shift revealed symptoms that led to a series of misdiagnoses, invasive interventions, and profound personal losses. Over the years, Levi has become a passionate advocate for rare disease patients, using their own story to challenge stigma, push for better care, and inspire legislative and medical innovation. Levi’s writing is a raw, honest testament to the realities of living with chronic illness. Rejecting the pressure to sanitize or “stay positive,” Levi writes to validate the pain, fear, and isolation that so many patients experience but rarely express. Through their words, Levi dismantles toxic positivity, encourages radical honesty, and reminds readers that it’s okay to be imperfect, to grieve, and to struggle—while still finding moments of joy, connection, and defiance. At the heart of Levi’s work is a belief in the power of storytelling to heal, connect, and change the world. Inspired by the Bhagavad Gita’s wisdom—“Our bodies are known to end, but the embodied self is enduring, indestructible, and immeasurable; therefore, fight the battle!”—Levi’s mission is to help others find strength in their own stories, to advocate for themselves, and to build a community where no one has to fight alone. Levi’s advocacy has evolved beyond storytelling into action, embodied by “What the Shunt?!”, a project born from the urgent need for honest, accessible resources for those navigating life with shunts and complex neurological conditions. Through “What the Shunt?!”, Levi is building a comprehensive toolkit—combining educational resources, symptom tracking, advocacy updates, and community connection—to empower patients with the knowledge and support they deserve. While this project is a solo endeavor for now, it is deeply rooted in Levi’s lived experience and unwavering commitment to ensuring no one has to face the storm alone. Levi’s motto—“Life sucks, sure. But I will always find a way to make it suck less”—reflects a commitment to living fully, even in the face of relentless challenges. Levi’s blogs and advocacy are an invitation: to fellow patients, allies, and anyone who has ever felt unseen or unheard. Together, Levi believes, we can create a world where every voice matters, every struggle is valid, and every survivor is celebrated.