2026 Q&A Part 2
Sierra Domb, medical advocate and Founder of the Visual Snow Initiative (VSI), shares her journey in advocacy, raising awareness, and founding VSI. She discusses advancing research, creating resources, and guiding others on chronic illness activism. Part 2 of an in-depth Q&A.
As an advocate, you turned your struggles with chronic medical conditions into action. What work have you done to advance awareness, research, understanding, or provide resources for others facing similar challenges?
In 2018, at age 23, I organized the first Visual Snow Conference at UCSF to unite global researchers and individuals with VSS, and founded the nonprofit Visual Snow Initiative (VSI) to advance awareness, education, recognition, and research. I established a Global Research Team, sparking collaborations in seven countries and initiating funding at institutions including King’s College London and UCLA. Since then, VSS research has quadrupled, producing advances in biomarkers, pathophysiology, symptomatology, and treatment options. We created the first official diagnostic criteria, the first Global Physicians Directory, the first pediatric resources via VSI 4 Kids, a multilingual website, numerous educational materials, and online awareness content. I created a partnership with the AnCan Foundation to launch the first VSS video chat support group and partnered with the Oxford Mindfulness Foundation to create a globally accessible app integrating evidence-based therapies for VSS’s neurological and perceptual features.
After being told it was impossible, together Dr. Peter Goadsby and Dr. Owen White, we secured the first ICD-11 recognition of VSS and its hallmark symptom, visual snow, from the World Health Organization, a historic milestone in global clinical and scientific acknowledgment. I also facilitated multidisciplinary research collaborations with institutions including MIT, UC Denver, University of Perugia, Monash University, University Hospital of Bern, Johns Hopkins, Mayo Clinic to name just a few.
For decades, individuals with Visual Snow Syndrome faced skepticism, marginalization, and mistreatment, including instances of wrongful institutionalization. Although the condition has been clinically documented since 1944, it has remained largely overlooked by the medical community. This, together with the condition’s debilitating symptoms, is having profoundly negative and devastating global impacts, highlighting the urgent need for sustained research initiatives.
In recent years, Visual Snow Syndrome has gained recognition and research attention within neurology, neuro-ophthalmology, neuro-optometry, and even from the World Health Organization. Yet awareness of the condition remains limited among the public and the international medical community. This gap can lead to delayed or missed diagnoses and care that is dismissive or misinformed, leaving patients without the support, guidance, or validation they need. Expanding education, training, and awareness among healthcare providers and ensuring health systems worldwide stay current with research and best practices is essential to providing compassionate, effective care. Accurate diagnosis, thoughtful management, and equitable access to specialists and treatment options are critical so that no one is left to navigate these challenges alone.
Many other medical conditions face similar obstacles. I focus my efforts where I can make the most meaningful difference, guided by my personal, academic, and professional experiences and a desire to help those whose struggles are often overlooked.
I serve on the International Advisory Board for the Columbia-WHO Center for Global Mental Health, working to reduce stigma, improve access in underserved regions, and highlight marginalized medical topics in neuroscience and women’s health. I delivered a TEDx Talk on Visual Snow Syndrome after I founded the global nonprofit organization, Visual Snow Initiative.
As a member of the Erythromelalgia Association, I have raised awareness of the condition and spoken on neurological topics like brain health and homeostasis, drawing on my personal experience and research insights. I also collaborate with United Latinas to amplify Latina voices and shed light on overlooked health topics, including homeostasis, women’s health, chronic illness, and the roles of neurotransmitters and hormones, through my writing.
While my work focuses on these areas, the principles and frameworks I have developed can apply to other underserved conditions and global health challenges. By sharing knowledge, fostering collaboration, and leading with compassion, I hope to empower others to make a difference and create a more understanding and supportive world.
Were there any turning points that changed how you understood or managed your conditions?
Discovering Dr. Peter Goadsby’s research was a major turning point for me. It was the first time I saw my symptoms described exactly as I experienced them, leading to my official diagnosis of Visual Snow Syndrome.
Through my advocacy work with the Visual Snow Initiative and the global research team we developed, I became a research collaborator and deepened my understanding of neuroscience, brain health, and neurotransmitters, and how the brain influences all body systems, even in areas you might not expect. This helped me understand the science of why certain approaches listed on VSI’s website worked for me and why others did not. It also highlighted the importance of supporting homeostasis, pursuing personalized care, applying evidence-based strategies to manage my conditions and overall health, and advocating for improved understanding and care within the medical system for myself and others.
What would you tell someone who wants to advocate for chronic illness awareness but doesn’t know where to start?
If you want to advocate for chronic illness awareness, do not wait until you feel “ready” or “qualified”. Even imperfect advocacy is better than none. The first step is simply to start. Once you begin, decide what form your advocacy will take. It could be sharing your personal experience through a social media post or video, contributing research or clinical expertise, joining or starting a nonprofit, engaging in policymaking, creating educational resources, fundraising through an existing charity event or by hosting your own, wearing clothing or accessories that spread awareness, or any other method that aligns with your skills and passions. What matters is that it is authentic to you.
Do not let the odds stop you. True change often comes from breaking new ground and doing what no one else is doing. Be willing to try approaches that may fall outside traditional paths. Do not accept that something is impossible just because it has not been done before. Critical thinking, open-mindedness, and a balance of science and compassion are essential. When you believe in something, take action even if the path is untested. Outcomes are never guaranteed, but even small efforts can create real impact.
Share your experience in a way that feels authentic to you. Everyone’s journey with a chronic condition is unique, and your perspective can both represent others with similar experiences and enrich the broader understanding of variability in patient experiences. This contributes to better research, treatments, and resources.
Building relationships is also key. Seek mentorship or collaboration based on substance rather than status. Identify individuals or organizations whose work demonstrates real impact, not just optics. Be clear about what you bring to the table and how the partnership can be mutually beneficial. Rejection or silence is not always personal. It may simply mean the fit is not right. Focus on what you can control, including your skills, knowledge, and approach, and let your efforts speak for themselves.
Even if starting a nonprofit feels unimaginable or you doubt your qualifications, waiting only slows progress. Many circumstances are outside your control, including your health, others’ opinions, or systemic obstacles, but you can determine your responses and the steps you take. Concentrate on making a positive difference wherever possible, knowing that results are uncertain and not everyone will support your efforts. Despite the challenges, take initiative, because every chance to create change, however small, is worth pursuing.
If you are considering full-time advocacy while managing chronic conditions, be aware it can add stress that affects both emotional and physical health. Advocacy is not for everyone, so set boundaries, pace yourself, and prioritize self-care. Even small contributions, like sharing knowledge or supporting other advocates, can make a real difference without compromising your well-being.
And if you cannot advocate directly due to barriers or limitations, you can still contribute by supporting advocates or organizations you believe in. Share their work, help amplify their message, or contribute resources to help their efforts succeed. Even indirect support can be powerful.
Finally, embrace your unique background. Experiences from different fields, such as the arts, communication, or other areas, can bring fresh perspectives to advocacy, research, and problem-solving. Differences can be strengths, and approaching challenges creatively often leads to breakthroughs that traditional methods alone cannot achieve. The key is to act with authenticity, clarity, collaboration, and persistence, and to use your unique skills and experiences to drive the change you want to see, wherever you can.
(Important note: This reflects my personal experience and may not apply to everyone. Outcomes can vary between individuals. All strategies or considerations should only be applied under the guidance of a licensed medical provider to ensure they are safe, appropriate, and compatible with your individual symptoms, medical history, and current treatment plan.)
Sierra’s previous Q&A articles, covering her experiences with Visual Snow Syndrome then and now, exploring scientific, advocacy, and patient-centered topics, and offering resources for patients, doctors, and researchers, are available on the Visual Snow Initiative website.