Sierra Domb and her story of overcoming an unknown diagnosis and then helping millions across the world with Visual Snow

Sierra Domb is a Visual Snow 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).

Due to the debilitating nature of Sierra’s VSS symptoms, she could not see, drive, work, or function normally after onset of the 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.

Sierra soon realized it was up to her to figure this out. 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 explains why all the tests on her eyes came back normal. VSS can affect vision, hearing, cognition, sensory processing, and quality of life.

It soon became evident that she was not a medical outlier. Sierra’s story mirrored that of hundreds of thousands of people around the world. The vast majority embarked on medical odysseys much like hers. Many were distraught from being marginalized, 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 many in the medical community.

After Sierra realized there were limited resources and information available about the condition to help patients, this inspired her to become a philanthropic pioneer. She began learning about neuroscience and vowed to help others who suffer from the debilitating visual and non-visual symptoms associated with VSS. Her organization has since funded critical research in 7 different countries that garnered clinical and scientific acceptance for VSS, as well as pioneered treatment development for VSS across the world.

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 VSI team’s awareness, research efforts, and funded studies have played a pivotal role in legitimizing the condition and getting it officially recognized by international health organizations and scientific publications.

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 legitimacy and treatments for 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.

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 Insider, 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 landscape photographer.