CEO & Founder of the Visual Snow Initiative
After years of frightening medical testing and agonizing unknowns, Sierra discovered that she had Visual Snow Syndrome (VSS), a debilitating neurological disorder that affects an estimated 2-3% of the world’s population. But most of the medical community knew nothing about her condition. Like Sierra, countless people worldwide were being marginalized, misdiagnosed, and mistreated due to the medical community’s lack of acknowledgement and understanding regarding VSS. This had profoundly negative, devastating effects on their health and wellbeing. People with VSS were left isolated and traumatized after being dismissed by physicians, with no resources or hope.
After she realized that awareness, education, resources, and funding for VSS research were necessary to eradicate the persistence of this scenario she and so many others endured, Sierra founded the Visual Snow Initiative (VSI). Ever since, Sierra and the VSI team have worked diligently to facilitate collaborations between physicians and academic institutions, develop solutions alongside researchers, make neuroscience more palatable for everyone regardless of age or health literacy, and help people affected by VSS worldwide. Together, they strive to make the world a more accessible, educated, inclusive, and accommodating place for people of all ages affected by VSS.
Sierra’s story and credentials can be found below.
Sierra Domb is a Visual Snow Syndrome activist and trailblazer in neuroscience, philanthropy, and communication. Her nonprofit organization, Visual Snow Initiative (VSI), is dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for Visual Snow Syndrome (VSS).
In 2015, at 21 years old, Sierra’s life changed in an instant. As she was driving home from university, suddenly, her vision went black. Thankfully, she instinctively pulled her car over to avoid a crash, and the darkness only lasted for a moment. But when Sierra’s vision returned, the world did not look the same. Her entire visual field was overwhelmed by a frightening overlay of flashing lights and moving particles, which resembled dense television static, or “white noise”. This static overlay was unceasing, persisting 24/7 whether her eyes were open or closed. She would later discover this visual phenomenon had a name: “Visual Snow”. In the days that followed, other visual and non-visual symptoms appeared, including palinopsia, photophobia, enhanced entoptic phenomenon, diplopia, photopsia, tinnitus, and derealization.
Due to the debilitating nature of her symptoms, Sierra could not see, drive, work, or function normally after onset of her condition. Fearful that she was going blind (or worse), Sierra sought help from dozens of doctors and specialists at many renowned medical institutions. But no one could offer an explanation for her symptoms, let alone a diagnosis. Over the next year and a half, she was subjected to numerous medical tests, most of which focused on her eyes. Her test results always came back normal.
With “normal” results after reporting all these symptoms, Sierra was treated as a medical oddity. Her confounding case was met with mixed reactions, which ranged from fascination to frustration. Some physicians expressed compassion for her situation. Others blamed their inability to identify the problem via testing on her, insinuating there must be nothing truly wrong and it was “all in her head”. These dangerous implications and falsehoods only harmed Sierra’s health and wellbeing further. Void of any answers or hope, she began to lose faith in the medical system.
Soon thereafter, Sierra decided to take matters into her own hands. She realized it was up to her to figure this out and began doing research online. After locating an article published in a well-known medical journal that described her symptoms with astonishing precision, Sierra discovered that she had a medical condition called Visual Snow Syndrome, or VSS. VSS is a neurological disorder, which explained why all the tests physicians performed on her eyes always came back normal. VSS can affect vision, hearing, cognition, sensory processing, and quality of life. The primary, most common symptom of VSS is seeing visual snow, which refers to seeing static, flickering dots, and flashing lights across the entire visual field 24/7 (with your eyes open and closed). VSS also entails many other visual and non-visual symptoms, which Sierra was experiencing.
Upon further research, it soon became evident that she was not a medical outlier. Sierra learned that, in actuality, her story mirrored that of thousands of people around the world. The vast majority embarked on medical odysseys much like hers. Most were distraught from being marginalized, mistreated, misdiagnosed, and/or not diagnosed. They were left isolated and traumatized due to the severity of their symptoms and the lack of acknowledgement for VSS on behalf of the medical community.
After her own harrowing experience and realizing what others were going through, Sierra decided to become a philanthropic pioneer dedicated to establishing newfound awareness, education, resources, and research for VSS. She began learning about neuroscience, vowing to advocate for herself and others who were suffering from the debilitating visual and non-visual symptoms of VSS.
In 2018, Sierra and her team organized the first Visual Snow Conference in history at UCSF, a free summit that brought together VSS patients and their families with doctors, researchers, and scientists with knowledge of VSS from Australia, Canada, England, and various cities in the United States. Thereafter, she founded VSI and created a Global Research Team comprised of physicians, scientists, and researchers from around the world. Together, they collaborated to create essential physician-patient resources, such as the first-ever Diagnostic Criteria for Visual Snow Syndrome and the first-ever Directory of VSS Physicians & Specialists. The establishment of clinical criteria for VSS, global awareness, and scientific evidence via VSI-funded studies led to the clinical, scientific acceptance of VSS as a distinct, neurological condition (with both visual and non-visual symptoms) that affects vision, hearing, sensory processing, and cognition, as well as the development of treatments where none existed.
Sierra’s organization has played a pivotal role in legitimizing VSS and getting it officially recognized by international health organizations. VSI’s activism and research efforts have been acknowledged by medical and scientific institutions, such as Mayo Clinic, Cleveland Clinic, Healthline, NORD, and NIH. The studies funded by VSI have resulted in discoveries regarding the biological basis, pathophysiology, and treatment of VSS symptoms, as documented in medical and scientific publications, such as Frontiers, Frontiers in Neurology, Brain Communications, Annals of Neurology, Neurology (American Academy of Neurology), Journal of Neuro-Opthalmology, and PubMed.
Sierra is currently leading an initiative, alongside Dr. Peter Goadsby and Dr. Owen White, to get Visual Snow Syndrome recognized by the World Health Organization (WHO), so it can be designated its own code within the International Classification of Diseases (ICD). If approved, this ICD code will allow for VSS to achieve global clinical/scientific legitimacy and recognition. It can also produce better outcomes for healthcare providers, researchers, and VSS patients, including eligibility for insurance coverage and financial support — a cause that has been deeply personal and important to Sierra since she founded VSI.
With her B.S.C. in Communication Studies from the University of Miami and concentration in behavioral sciences & health communication, Sierra is passionate about empowering others to overcome adversity and making neuroscience more accessible for people of all ages, backgrounds, and degrees of health literacy. Her activism and efforts have brought VSS to television, news publications, and podcasts/radio. VSI has sponsored events, like the Daytime Emmy Awards, and garnered support from public figures, such as The Beatles’ Ringo Starr. Sierra’s story has also been featured in news & media outlets, such as Business Insider and CBS. She also produces educational and multimedia content about VSS.
In her TEDx Talk, “What is Visual Snow? Transforming Anguish into Action”, Sierra shares the struggles she and many others with VSS face as well as how she used innovative techniques to reduce patient marginalization and legitimize a medical condition many once believed “did not exist”.
Sierra has been the host of her own radio show and is a Writer/Reporter whose articles and photographs have been published in The Miami Herald. She is also a professional voice actress and award-winning photographer.
My Journey with Visual Snow Syndrome
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All donations to the Visual Snow Initiative go directly to Visual Snow Syndrome (VSS) research.
Your tax-deductible contribution ensures that global research will continue and makes a positive difference in the lives of people affected by VSS.