Cleveland, Ohio — Sierra Domb’s life took an unexpected turn one morning in 2015 when she experienced a sudden blackout while driving to college. Struggling to maintain control, she managed to steer her vehicle off the road, overwhelmed by fear as her vision went completely dark. Although her sight gradually returned, it would never return to normal. This incident marked the onset of her battle with visual snow syndrome, a rare neurological disorder characterized by the persistent perception of flickering dots or “snow” affecting her entire field of vision.
Visual snow syndrome remains largely misunderstood and is often underdiagnosed, affecting approximately 2 to 3 percent of the population to varying degrees. Many people live with its symptoms for years without awareness of the condition, partly due to limited scientific research. For Domb, now 30, her symptoms include double vision, extreme light sensitivity, and constant headaches. The challenges became so severe that she could no longer drive and had to take a significant leave of absence from college.
Domb spent years seeking answers, only to be met with skepticism from some medical professionals. “I was constantly dismissed or told I was too young to have serious health issues,” she said. The lack of recognition surrounding her symptoms left her feeling isolated in her struggle. As her condition worsened, treatments seemed ineffective and at times exacerbated her symptoms instead of alleviating them.
The Cleveland Clinic notes that the term “visual snow syndrome” was coined in 2013, and even now, experts remain puzzled about its origins. Some scientists suggest the condition may stem from overactivity in the brain areas responsible for processing visual information. Additionally, it has been observed in patients with anxiety or migraines, who often experience sensory disturbances known as “auras.”
Despite the medical challenges she faced, Domb found the strength to advocate for herself and others suffering silently. Recognizing the need for awareness, she founded the Visual Snow Initiative in 2018. Since then, the organization has provided support and gathered testimonials from individuals across 93 countries, amassing more than 60,000 followers on social media. “It was heartbreaking to realize that so many others were experiencing similar struggles,” Domb said.
Domb’s advocacy efforts have yielded significant recognition. The World Health Organization has acknowledged visual snow syndrome as part of its International Classification of Diseases. This milestone marks a pivotal moment in her journey and for those affected by the condition. “I am deeply grateful for this recognition, but it’s just the beginning,” she explained. Her ambition is to continue pushing for advancements in research, treatment options, and increased understanding of the condition.
The initiative aims to fund research that explores effective treatments and management strategies for visual snow syndrome. Domb emphasizes that she is not a medical professional, but rather a patient determined to turn her struggles into a source of support for others. “My goal is to give a voice to those who feel overlooked, ensuring they don’t have to endure a medical odyssey like I did,” she stated.
As Domb travels globally to share her story, she reflects on the value of community and support. She hopes to inspire others facing similar challenges to seek help and to advocate for themselves. Through her efforts, Domb aims to transform awareness into tangible progress, forging a path towards better understanding and management of visual snow syndrome for future generations.