How Sierra Turned Her Visual Snow Syndrome & Medical Trauma Into Advocacy

Imagine that one day, without warning, the way you see and experience the world changes completely. Everything around you is overlaid with thousands of flashing lights and flickering dots, like a relentless snowstorm or static on an old television screen. Faces, text, the sky, and even darkness itself are obscured by this constant visual noise. Moving objects leave trailing afterimages, appearing multiplied, as if your brain were copying them across what you see. Light itself becomes physically painful, producing an intense glare that overwhelms your senses. But it doesn’t end with visual symptoms.

You experience non-visual symptoms too, including migraines, ringing in the ears (tinnitus), tingling or numbness in the hands and feet (paresthesia), electric-shock sensations through the head or body, dizziness, hypersensitivity to sights and sounds, and feelings of unreality or disconnection from yourself and the world (derealization and depersonalization). These experiences can be frightening, confusing, and exhausting.

Everyday activities, such as work, school, reading, driving, using screens, being in bright or stimulating environments, and social interactions become overwhelming and often debilitating as you try to adapt to this new way of experiencing life. Even daily tasks can feel impossible due to the agonizing visual strain, persistent sensory disturbances, and cognitive overload.

For me, that terrifying realization wasn’t a nightmare; it became my reality in 2015. Almost overnight, my life was profoundly derailed by the sudden onset of a condition I didn’t know existed, and seemingly, neither did most of the medical world.

This neurological condition, known as Visual Snow Syndrome (VSS), affects an estimated 2-3% of the global population. VSS is a brain-processing disorder that can change how you see, how your senses respond, and your overall ability to navigate daily life. With millions of people of all ages impacted, it is critical to recognize that these long-overlooked patient experiences are real, can vary from mild to severe, and are deserving of understanding, compassion, and resources. Some are born with these symptoms, while others may develop them later in life, as I did at 21.

The arrival of VSS forced me to confront a medical community that had virtually no understanding or resources, where many had never heard of the condition and questioned the reality of my experiences. After seemingly endless medical tests and being passed from specialist to specialist, some suggested I might face permanent blindness or a life-threatening neurodegenerative disorder, yet testing offered no clear answers. Others dismissed my symptoms entirely or attributed them to anxiety. A few acknowledged that my symptoms were real but suggested I might have a condition that scientists had not yet discovered, leaving them unable to provide assistance. The lack of knowledge, help, and reassurance left me confronting profound fear and uncertainty at an already vulnerable time.

I was grieving the loss of clear vision, my independence, and my previous trajectory in life, all while navigating a healthcare system that didn’t have a name, let alone any treatments or a cure, for my suffering.

But as I scoured for answers, I discovered a heartbreaking truth: I was not alone. Although the first clinical records of Visual Snow actually date back to 1944, the syndrome had remained largely ignored and misunderstood by the medical community for decades. Millions of people of all ages worldwide were marginalized, misdiagnosed, mistreated, and left isolated without recognition, validation, or resources.

To learn more about Visual Snow Syndrome (VSS) and access helpful information and a variety of resources for patients, doctors, and researchers, please visit: https://www.visualsnowinitiative.org

About the Author: Sierra Domb is a global health advocate and the Founder of the Visual Snow Initiative (VSI).