2026 Q&A Part 1
Sierra Domb, medical advocate, research collaborator, and Founder of the Visual Snow Initiative (VSI), shares her personal journey navigating multiple chronic conditions, including Visual Snow Syndrome, Erythromelalgia, and Autoimmune Dysregulation. Part 1 of an in-depth Q&A on chronic illness and advocacy.
Please note: Her 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.
Can you share a bit about yourself, both professionally and personally?
Hi, I’m Sierra Domb, Founder of the Visual Snow Initiative (VSI), International Advisory Board Member for the Columbia-WHO Center for Mental Health, research collaborator, and advocate for underrepresented medical conditions, with a particular focus on the neurological condition Visual Snow Syndrome and highlighting marginalized yet critical topics in neuroscience and women’s health. My work centers on collaborative neuroscience education, developing resources informed by both science and first-hand patient experiences, including my own, accessible health communication, and addressing the compounded effects of medical conditions on physical and mental health.
My academic background is in health and intercultural communication, with an emphasis on behavioral sciences and qualitative data analysis. After pausing my studies due to medical conditions, I returned despite ongoing health challenges, and following the founding of VSI, I developed a renewed interest in advocacy and began applying my education to support humanitarian health initiatives.
Before this work, I pursued creative endeavors in the arts, including writing, photography, and voice acting. As my medical conditions increasingly affected my life and I witnessed the lack of education, support, and resources for these conditions in the medical community, which was causing catastrophic impacts for millions of patients and their loved ones worldwide, I shifted my personal and professional focus to advocacy and resource development.
Despite this shift, I continue to be passionate about both my creative and scientific pursuits, as well as hobbies like cooking and gaming when I am feeling well enough and can find the time, which can be challenging with work, but I still enjoy them.
Born in Miami and now based in Los Angeles, I deeply value my multicultural identity and family roots across the globe. Growing up with this perspective instilled open-mindedness from a young age and shaped how I approach the world. I strongly reject egocentrism, ethnocentrism, ignorance, prejudice, superficiality, cruelty, and arrogance. While traveling can sometimes be challenging due to my medical conditions, I enjoy spending time with family and friends across the Caribbean and Latin America when I am healthy enough to travel, regions that hold a special place in my heart.
What chronic medical conditions do you have, and how have they shaped your path into advocacy and nonprofit work?
I have three medical conditions: Visual Snow Syndrome, which began in 2015 when I was 21 years old, and Erythromelalgia and Autoimmune Dysregulation, which I have experienced since childhood.
Visual Snow Syndrome (VSS) is a neurological condition that affects how the brain processes vision and sensory input, often causing debilitating visual and non-visual symptoms that impact cognition and daily functioning. Erythromelalgia (EM) is a neurovascular pain disorder that causes pain, inflammation, swelling, and heat intolerance. Autoimmune Dysregulation (AD) is a condition in which the immune system malfunctions, attacking the body’s own tissues and leading to chronic inflammation, vulnerability to infections, and a range of systemic complications.
Each of these conditions has significantly impacted my quality of life, and together, they have been profoundly debilitating. The combination of physical pain, visual impairments, sensory disturbances, inflammation, and immune dysfunction can make even everyday tasks challenging. Thankfully, my personal case of Visual Snow Syndrome improved substantially since onset through treatment options identified by VSI in clinical studies. Through my own neuroscience research on VSS, I also developed management strategies that have helped me better cope with Erythromelalgia. Both conditions still flare periodically during times of physical or mental stress, and for Erythromelalgia, in temperature-specific triggering environments. However, my Autoimmune Dysregulation continues to present significant challenges and makes daily life difficult. All of these conditions can worsen if I do not take proper care of myself, which is easy to understand in theory but difficult to maintain in practice, especially while managing the everyday demands of work, emotions, and life stressors like anyone else, while striving to support a healthy body and maintain homeostasis.
(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.)
The challenges were compounded by the medical community’s lack of knowledge about these conditions. Diagnoses came only after years of intrusive and costly medical testing, leaving me with more fear and uncertainty than answers. Treatment options, scientific research, and resources were virtually nonexistent. Unlike EM and AD, which can produce visible symptoms, VSS is invisible. Early medical professionals dismissed or misdiagnosed my symptoms as blindness, terminal illness, or migraine. I was told my condition was not real, simply because medicine had not yet recognized it, although later research confirmed its legitimacy.
Dealing with chronic illness is difficult enough, but societal misunderstanding and a lack of awareness added another layer of challenge. Even within the medical community, where professionals are expected to know everything, knowledge is still evolving, and gaps remain. That is why it is crucial to share patient experiences with both passion and compassion to advocate for systemic improvement for oneself and for others.
Globally, people of all ages face the challenges of chronic medical conditions, and these difficulties are magnified by navigating medical systems and societal structures that do not consistently provide understanding, empathy, resources, accessibility, support, or effective care.
Limited funding, systemic biases, gaps in knowledge, and organizational challenges can hinder progress within healthcare systems. Endless layers of bureaucracy often go unquestioned simply because that is how things have always been, yet these processes need to be critically examined, as they slow progress and can cost significant time, money, resources, and even lives. Additionally, insufficient equity, communication, and collaboration among medical professionals, researchers, and patients create further barriers and stall advancements.
Initially, I was hesitant to speak openly about my conditions, having faced negative reactions from others. I tried to keep up with life despite the challenges. I realized that silence would not help me, and not others. If I wanted to support systemic reforms, health equity, and awareness for chronic illness patients and marginalized groups, I had to educate and advocate for myself.
Though I felt trepidation, I chose to speak up and turn my health challenges into a catalyst for positive impact, both as a way to cope and as a means to help others. I never imagined I would start a nonprofit, and at first I did not feel qualified. But waiting would only delay progress, so I persisted. There are many things I cannot control, including my health, the actions or opinions of others, and systemic injustices. What I can control are my own responses and the actions I take. I focus on creating positive change where I can, recognizing that outcomes are not guaranteed and not everyone will embrace that change. Still, even against the odds, I take action because every opportunity to make a difference in something that matters, no matter how small, can be worth the effort.
Currently, I use my lived experience with complex medical conditions and my professional background in health communication and research to inform, educate, and inspire accessible, compassionate, and science-driven advocacy. My goal is to empower underrepresented voices, advance health equity, improve communication about complex and marginalized medical issues, support evidence-based treatment development and research collaboration, strengthen healthcare infrastructure, and drive catalytic change within medical and societal systems.
As someone who faced medical struggles and under-recognized, chronic illnesses from a young age, why is it important for doctors, parents, and caregivers to take young patients seriously?
Young patients, including those with under-recognized or invisible medical conditions, are often overlooked. There is a persistent misconception, particularly in medicine, that most young people are naturally healthy and that serious medical issues only affect older adults. In reality, health is complex, and young people can face significant health challenges that are often underestimated or not taken seriously, which can lead to dismissal and have devastating consequences. Recognizing this is essential for doctors, parents, and caregivers to provide proper care, guidance, and support for patients of all ages.
Similarly, being sick does not have a single universal appearance. People often rely on stereotypes of what illness should look like, and these assumptions can be harmful because they can lead to dismissal, misunderstanding, or delays in care. Young patients also face the challenge of presenting themselves in a coherent and composed way despite pain, brain fog, frustration, or fear in order to be taken seriously. This can create a sense of impossibility, where no matter how they present, their experience may not be fully acknowledged or validated by doctors, parents, or caregivers.
When adolescents or young adults seek medical care outside of pediatrics, they often hear dismissive remarks such as “you are too young to be here” or “you will grow out of it”. While some conditions are temporary, others are not, and early recognition is crucial. Taking young patients seriously allows doctors, parents, and caregivers to support early intervention, monitoring, and appropriate care before conditions fully develop. Being dismissed can deeply affect a young person’s emotional well-being and self-esteem, both of which are vital for navigating the challenges of treatment and everyday life. Adolescents already manage academic, social, and personal pressures, and it is unfair to automatically attribute their symptoms to stress or anxiety without careful evaluation.
If given the choice, virtually no one would choose to be sick. Medical issues require time, money, and emotional energy for patients and families. Empathy, clear communication, and validation are essential. Recognizing this means doctors, parents, and caregivers can respond thoughtfully by taking symptoms seriously, conducting appropriate evaluations, offering personalized care, and utilizing helpful resources. If a provider cannot offer answers, being honest, providing a timely referral to a specialist, or showing a willingness to learn more can make a significant difference in helping young patients, as well as patients of all ages, feel seen, heard, and supported.
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.