Sierra Domb, Founder of the Visual Snow Initiative (VSI), was recently interviewed by VoyageLA Magazine for their Life & Work series. In this feature, Sierra opens up about her journey, her motivation for starting VSI, and her hopes for the future of those affected by Visual Snow Syndrome (VSS).
Early Struggles & Health
Having struggled with Autoimmune Dysregulation (AD) and Erythromelalgia (EM) since childhood, both conditions were largely under control by the time I reached young adulthood through a combination of corticosteroids for AD and lifestyle changes for EM.
As a teenager, I tried my best to balance school, extracurricular activities, and social life while managing frequent doctor’s visits, chronic pain, and periods of being immunocompromised that often kept me from attending school as much as I wanted.
Turning Point
Arriving at university marked a turning point, where life felt full of possibility and my goals attainable. Shortly after, in 2015, I developed Visual Snow Syndrome (VSS) at the age of 21. My VSS came on gradually over the course of a day, with subtle symptoms appearing in the morning and full onset hitting later that day while I was driving back to school from a nearby food shop. Suddenly, my vision went black behind the wheel for a moment.
The Onset of VSS
When it returned, I was left with relentless visual disturbances, including flashing lights, double images, and distortions, alongside tinnitus, paresthesia, and derealization. My memory felt fuzzy, migraines were constant, and above all, I was gripped by fear about what was happening to me.
Doctors only reinforced this fear as they knew nothing about VSS and misdiagnosed me, suggesting possible blindness or death due to neurological symptoms often linked to degenerative and terminal illnesses. I desperately tried to explain a condition I barely understood myself. Some doctors even questioned my sanity, having never seen symptoms like mine before.
Discovery & Diagnosis
One of the important discoveries I made was an academic paper about a condition called Visual Snow Syndrome (VSS), which described my symptoms exactly. I reached out to the paper’s author, neuroscientist and Brain Prize winner Dr. Peter Goadsby, who diagnosed me with the condition. Dr. Goadsby explained that despite the validity of VSS and its widespread global impact, most patients are still dismissed by medical professionals.
The profound lack of understanding and resources for VSS worldwide was staggering, leaving me to navigate a confusing maze of uncertainty and skepticism until I connected with Dr. Goadsby. He told me there were only a handful of researchers studying VSS, but their efforts to advance awareness, scientific legitimacy, and treatment options were stalled due to no funding.
Founding of VSI
In 2018, at the age of 23, I organized the first-ever Visual Snow Conference, which was held at UCSF, to bring together global researchers and individuals living with VSS. I also founded the Visual Snow Initiative, a nonprofit organization created to raise awareness, expand education, foster scientific recognition, and advance medical research for VSS.
From the very start, I never felt qualified to run a nonprofit. I was operating on autopilot, shocked and numb, as I dealt with my debilitating VSS symptoms. Yet, I was driven by the need to change my circumstances and simply tried my best while navigating immense challenges.
Mission & Motivation
With funding nonexistent, research at a standstill, and millions of individuals of all ages worldwide affected by VSS, I felt compelled to take action. Founding the Visual Snow Initiative was my way of coping with the traumatic journey of developing VSS, just as I felt my life was finally starting to heal from earlier medical struggles and a fulfilling future seemed within reach.
Impact & Reach
Through this work, we have been able to inform the public about VSS, fund medical research for VSS in seven countries, share essential educational resources, and build strong collaborations with doctors and researchers worldwide to advance clinical recognition and generate new research discoveries for the condition.
I felt deeply honored and grateful that anyone believed in what we were building and wanted to support me. Every returned message, every connection made, and hearing from people affected by VSS in 93 countries after thinking I was completely alone with this condition was humbling. Their support fueled my determination and gave me the strength to keep going.
Reflection & Philosophy
Personally, it helps me to search for what good, however small, might come out of the bad, whether it’s becoming wiser, kinder, more resilient, or more aware of what truly matters. But I also know that not every wound leaves you with something to be grateful for. Some pain is just pain. Sometimes it’s simply about surviving, doing what you can to change what’s in your control, and finding glimmers of light where they appear.
Helping others, whether by listening, sharing what I’ve learned, or just being there, is one of the few things that always feels worthwhile. It’s important to blend scientific reasoning with compassion and remain open-minded. I try to meet ignorance with empathy and education when I can, and to keep learning myself. All I can do is show up, always try my best, do what I can to help, and hope that my efforts make things a little less heavy for someone else.