Sierra Domb - Founder of the Visual Snow Initiative
Sierra’s journey began with years of debilitating medical uncertainty and agonizing frustration. Struggling with the sudden onset of symptoms that affected her vision, hearing, sensory processing, cognition, and overall quality of life, she encountered a healthcare system largely uninformed about her neurological condition, Visual Snow Syndrome (VSS). She faced marginalization, misdiagnosis, misinformation, mistreatment, and a lack of resources. With VSS affecting an estimated 2-3% of the global population, Sierra soon realized that millions of individuals of all ages worldwide were enduring similar medical odysseys. This devastating gap in awareness negatively impacted their health and well-being, leaving them isolated and traumatized by dismissals from physicians, with no resources or hope in sight. Motivated by her own experience and the struggles of others, Sierra founded VSI to create hope, provide answers, and drive action for individuals affected by VSS worldwide.
Through VSI, Sierra has facilitated successful global collaborations between medical professionals and academic institutions, developed essential physician-patient resources, and made neuroscience education more accessible to people of all ages and health literacy levels to improve understanding of VSS. By raising awareness, providing education, securing funding for research, and developing innovative solutions, Sierra and the VSI team strive to break the cycle of isolation and misdiagnosis that many individuals with VSS, including Sierra herself, have faced. Their efforts are dedicated to creating a more inclusive, educated, and supportive world for those affected by the condition.
Sierra’s journey with Visual Snow Syndrome, along with her credentials, is detailed below.
About Sierra Domb - Her Work and Journey with Visual Snow Syndrome
Sierra Domb is a global activist for Visual Snow Syndrome (VSS), a humanitarian, and a trailblazer in neuroscience, philanthropy, and communication.
As the founder of the Visual Snow Initiative (VSI), she has worked diligently to raise awareness, provide education, create essential resources, advocate for patients, and drive research and treatment development for VSS. Sierra also serves on the International Advisory Board for the Columbia-WHO Center for Global Mental Health, where she works to address stigmas surrounding neurological and neurodevelopmental conditions that impact mental health, while advocating for improved resources in underserved regions. Recognized as a TEDx Speaker, a 2024 UMiami 30 Under 30 Award-Winner for her activism and philanthropic work related to VSS, Sierra is also an author and collaborator at Oxford Mindfulness. Sierra was the driving force behind the successful and historic initiative to secure the first-ever ICD codes for both Visual Snow Syndrome and its hallmark symptom, Visual Snow, characterized by the constant presence of static or snow-like dots throughout the visual field, 24/7.
In 2015, at 21 years old, Sierra’s life changed in an instant. Her journey with VSS began one morning when she noticed subtle flickering and an increase in floaters in her vision. Later that day, while driving back to school from a café, her vision suddenly went black behind the wheel. Instinctively, she pulled over to avoid a crash. The darkness lasted only a moment, but when her vision returned, the world looked drastically different. Her entire visual field was overtaken by a relentless overlay of flashing lights and moving particles, resembling dense television static or “white noise.” This visual disturbance persisted 24/7, whether her eyes were open or closed. She would later learn this phenomenon was called “Visual Snow.”
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Over the following days, Sierra’s symptoms worsened, affecting both her vision and overall sensory processing. She experienced palinopsia, photophobia, enhanced entoptic phenomena, diplopia, photopsia, tinnitus, derealization, and more. At the time, Sierra was studying communication and film, hosting her own radio show, and working as a voice actor. Her symptoms were so debilitating that she could no longer drive, was forced to take a hiatus from school, and found even familiar faces and beautiful views turned into disorienting nightmares. She feared her vision might deteriorate further. Doctors, unable to provide answers, even feared she might go blind or worse. The profound uncertainty and lack of understanding were deeply isolating and frightening.
Despite seeking help from numerous doctors and specialists at renowned medical institutions, no one could explain Sierra’s symptoms or provide a diagnosis. After extensive testing, primarily focused on her eyes, all results came back normal. Despite the severity of her condition, every doctor she saw either misunderstood or dismissed it as “stress” or “anxiety.” Sierra was prescribed medications that worsened her symptoms and caused new, harmful one only to be told to “get used to it” or that it was “just her imagination.” On top of the already debilitating symptoms, this only made things worse, leaving her without support, resources, or hope.
The relentless visual static, sensory disruptions, and neurological symptoms were devastating on their own. The added burden of medical trauma, misdiagnoses, and neglect combined with debilitating visual and non-visual symptoms led Sierra to develop Post-Traumatic Stress Disorder (PTSD) after years of seeking answers and support. This only amplified the challenges of living with VSS.
It was gut-wrenching to feel invisible and alone in her struggles. Finding others online with Visual Snow Syndrome was both cathartic and painful. While some offered support, others told Sierra her life was over, there was no hope, and that she should end her life. As a young woman, it was heartbreaking to see how deeply others were suffering, some even contemplating suicide. And this wasn’t just her experience; millions worldwide of all ages live with Visual Snow Syndrome. Clinical records of the condition date as far back as 1944, with patients between then and Sierra’s onset facing doubt, ostracism, mistreatment, and even wrongful institutionalization because no one believed them, and the medical community was neither educated about nor interested in VSS.
Sierra couldn’t bear the thought of anyone else enduring what she went through. Despite feeling unqualified at the time, she knew nothing would change unless she tried her best. Sierra channeled her frustration and trauma into creating change, determined to help both herself and others facing the same struggles. As she faced marginalization and mistreatment from a medical community unfamiliar with VSS, Sierra realized she needed take action not just for herself, but for the countless others struggling with similar challenges. Determined to create meaningful change, Sierra shifted her focus to studying neuroscience, philanthropy, activism, and innovations in healthcare. Her goal was to build a more informed, inclusive, and supportive world for those affected by VSS by providing resources, raising awareness through education, and advocating for improved treatment and research.
In 2018, she took a pivotal step toward fulfilling this mission. Sierra and her team organized the first-ever Visual Snow Conference at UCSF, a free summit that brought together VSS patients, their families, and leading experts from around the world. This landmark event not only raised awareness but also marked the beginning of Sierra’s efforts to create a global network of Visual Snow Syndrome experts. After the conference, Sierra founded the Visual Snow Initiative (VSI) and established a Global Research Team by introducing physicians, scientists, and researchers from across the globe. This collaborative team reignited VSS research and worked together to develop essential resources such as the first-ever Diagnostic Criteria for Visual Snow Syndrome and the first-ever Global Directory of VSS Physicians Specialists. The studies funded by VSI have led to key discoveries about the biological basis, pathophysiology, and treatment of VSS symptoms, which have been published in medical and scientific journals, including Frontiers, Frontiers in Neurology, Brain Communications, Annals of Neurology, Neurology (American Academy of Neurology), Journal of Neuro-Ophthalmology, PubMed, and more.
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The efforts led by Sierra and VSI have helped establish VSS as a distinct neurological condition, with both visual and non-visual symptoms, affecting vision, hearing, sensory processing, and cognition. Through VSI-funded studies, significant advancements have been made in understanding the biological basis, pathophysiology, and potential treatments for VSS. These discoveries have resulted in widespread scientific recognition of VSS, with support from prominent medical and scientific institutions such as the World Health Organization (WHO), Mayo Clinic, Cleveland Clinic, National Institutes of Health (NIH), National Institute for Health and Care Research (NIHR), National Health Service (NHS), and Healthline.
After the onset of VSS and the founding of VSI, Sierra returned to university to complete her studies while navigating new health challenges. Drawing from her personal experiences, she shifted her focus and earned a B.Sc. in Communication Studies with an emphasis on behavioral sciences, health communication, and qualitative data analysis from the University of Miami. Sierra is deeply committed to empowering others to overcome adversity and making neuroscience more accessible to individuals of all ages, backgrounds, and health literacy levels. Her advocacy has significantly raised awareness for Visual Snow Syndrome through television, news outlets, and podcasts. Sierra’s work has been featured in Business Insider, Healthcare Brew, CBS, and more. To further amplify the cause, VSI has sponsored events such as the Daytime Emmy Awards and gained support from influential figures like Ringo Starr of The Beatles.
In her TEDx talk, “What is Visual Snow? Transforming Anguish into Action,” Sierra shares the challenges she and many others with VSS face, illustrating how she transformed her personal struggle into a mission to reduce patient marginalization and legitimize a condition once dismissed by the medical community. Additionally, she produces educational videos and multimedia content about VSS for healthcare professionals and patients.
In 2024-2025, Sierra Domb, alongside Dr. Peter Goadsby and Dr. Owen White, led a groundbreaking initiative through the Visual Snow Initiative (VSI) that achieved a historic milestone: securing official ICD codes from the World Health Organization for both Visual Snow Syndrome (the neurological condition) and Visual Snow (the symptom of seeing static 24/7). This achievement marked the first time Visual Snow Syndrome was globally recognized within the medical and scientific communities. This milestone is a monumental victory for patients who have been marginalized and dismissed since the condition was first reported in 1944. By obtaining official recognition, VSI has paved the way for better diagnosis, research, and treatment worldwide, delivering long-awaited validation to those living with this misunderstood condition.
Through scientifically researched methods developed by VSI and with time, Sierra’s VSS has improved dramatically since its onset, with significant progress made in areas such as awareness, education, research, resources, treatment options, and more, compared to when she first developed the condition. While she continues to manage the remaining minor symptoms and cope with PTSD from her medical journey with VSS, she also faces Autoimmune Dysregulation (AD) and Erythromelalgia, secondary to AD, conditions she has lived with since childhood, which can cause severe pain, immunocompromised states, and distress at times. Despite her progress with VSS and her refusal to let the condition define her, Sierra acknowledges that her health challenges, including VSS, remain an integral part of her journey. She has used these challenges as a catalyst to drive positive change, ultimately helping individuals of all ages who face similar struggles.
Sierra has also hosted her own radio show and is a Writer/Reporter whose work has been published in The Miami Herald. A voice actress and award-winning photographer, Sierra’s diverse skills enhance her multidisciplinary expertise and advocacy.
For more from Sierra, visit her website at www.sierradomb.com.
Sierra's Articles
Sierra's Journey with Visual Snow Syndrome
Sierra Domb's Videos
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