On One Condition is a podcast dedicated to exploring the realities of living with specific health conditions. Through candid conversations, listeners hear directly from individuals navigating these experiences, how their conditions affect daily life, the challenges they face, and the ways they learn to manage and adapt. Hosted by Sylvain Berthelot, who has spent over a decade in the clinical trial industry, the podcast is driven by curiosity and a deep interest in how the human body works. More importantly, it serves as a platform to amplify voices, raising awareness about the wide range of medical conditions that impact people around the world.
In Episode 84, Sierra Domb, founder of the Visual Snow Initiative, joins the podcast to share her experience living with Visual Snow Syndrome (VSS).
“When Sierra was diagnosed with Visual Snow Syndrome (VSS), little was known about this condition, and it was extremely difficult for her to get a diagnosis. By founding the Visual Snow Initiative, Sierra moved mountains to increase awareness and help bring recognition, research, and support to millions worldwide.
VSS is a neurological condition that affects how the brain processes visual and sensory information. Sierra describes the sudden and terrifying onset of her symptoms at 21, when her vision changed permanently in an instant. She speaks candidly about the relentless nature of her condition, including constant visual disturbances, sensory overload, and insomnia, and how these symptoms disrupted every aspect of her life. Yet, beyond the physical impact, it is the emotional toll of being dismissed, misdiagnosed, and left without answers that stands out most.
What begins as a conversation about an often overlooked condition quickly unfolds into a powerful story of resilience, medical trauma, and advocacy. Sierra’s journey reflects a broader issue within healthcare, the difficulty patients face when their condition does not fit established frameworks.
Throughout the episode, Sierra offers a compassionate and honest perspective on living with chronic illness. She reminds us that resilience is often not a choice, but something we are forced to build, and that even small victories matter. Her story is both heartbreaking and inspiring, shining a light on the unseen struggles many people carry and the quiet strength it takes to keep going.
The song Sierra chose is Legend by Chronixx.”
—Sylvain Berthelot