Sierra Domb, Founder of the Visual Snow Initiative, shares a heartfelt open letter on Visual Snow Syndrome (VSS), its symptoms, challenges, and the importance of ongoing understanding and support for patients, reflecting its widespread impact and current scientific knowledge.
Dear Friends, Family, Educators, Employers, and Healthcare Providers,
Research suggests that 2-3% of the global population is affected by Visual Snow Syndrome (VSS), making this neurological condition highly relevant to all of us. VSS impacts millions of lives across all ages, often without people even realizing it. Some individuals are born with symptoms, others develop them later in life, and many do not know that their experiences have a name. Chances are you already know someone with this condition, will meet someone with it, or may even be discovering it in yourself.
In recent years, Visual Snow Syndrome has seen significant advances in recognition and research within neurology, neuro-ophthalmology, neuro-optometry, and even by the World Health Organization. Despite this, awareness of Visual Snow Syndrome remains limited among the public and within the international medical community. This harmful gap can lead to delayed or missed diagnoses and care that is substandard, dismissive, or misinformed, leaving patients without the guidance, validation, or resources they need. Improving education, training, and awareness among healthcare providers, as well as ensuring that health systems worldwide stay current with research and best practices, is critical to improving care for individuals with VSS. Accurate diagnosis, effective management, and equitable access to specialists and treatment options that may help are essential so that patients are not left to cope with misinformation, inadequate support, or barriers to appropriate care.
Imagine living each day with a debilitating neurological condition that shapes how you see the world, alters sensory processing, and affects your sense of self, all while navigating a society that does not yet fully understand. Facing this reality, the need for compassion and recognition are vital. How would you hope to be met, with understanding, informed care, and thoughtful attention to both the science and the lived experience?
If you know someone living with VSS, meet them with support, empathy, and respect, acknowledging their experiences and helping them navigate both the clinical and daily personal challenges they may face.
Understanding the Condition
Visual Snow Syndrome (VSS) is a neurological condition that affects how people see and experience the world. Its hallmark symptom, visual snow, is a continuous veil of tiny flickering dots across the visual field that persists 24/7. This static-like overlay occurs whether the eyes are open or closed and defines the condition.
Beyond visual snow, VSS can involve a wide range of additional visual and non-visual symptoms. While all individuals with VSS experience visual snow, the combination and severity of other symptoms vary, making each person’s experience unique. Many people also experience visual disturbances such as afterimages (palinopsia), halos or glowing around objects, light sensitivity (photophobia), difficulty seeing in low-light conditions (nyctalopia), enhanced entoptic phenomena, and an excessive number of floaters. Non-visual symptoms can include tinnitus (ringing in the ears), sensory hypersensitivity (increased sensitivity to stimuli such as light, sound, touch, or smell), balance difficulties, fatigue, difficulty concentrating, anxiety, depression, as well as derealization (feeling that the world around you is unreal) and depersonalization (feeling detached from oneself).
Some individuals experience VSS symptoms from birth, while others experience onset later in life. Visual snow can occasionally appear temporarily, but continuous visual snow accompanied by other symptoms is considered VSS. A full list of symptoms and diagnostic criteria is available through resources such as the Visual Snow Initiative (VSI).
VSS is considered a network disorder of the brain, involving differences in how regions such as the visual cortex, thalamus, and anterior cingulate cortex process sensory information. Neurotransmitter systems, including glutamate and serotonin, are involved, and emerging evidence suggests that others, such as GABA, may also play a role. In particular, the serotonin 5-HT₁A receptor helps regulate mood, anxiety, cognition, and visual processing. This receptor is a target of some medications affecting serotonin and may contribute to the sensory and visual disturbances observed in VSS, though research is ongoing.
VSS is a scientifically validated neurological condition that has gained formal recognition by the World Health Organization, with specific ICD-11 diagnostic codes following advocacy by the Visual Snow Initiative (VSI). While research and awareness are expanding, the understanding, compassion, and support of loved ones, educators, employers, healthcare providers, and communities remain essential.
History and Diagnosis
The history of VSS has been marked by neglect, misunderstanding, and marginalization. Early published descriptions of persistent visual disturbances, including “snowy vision” and flickering lights, date back to 1944. For decades afterward, the condition was dismissed, misattributed to migraine aura or psychological causes, or misdiagnosed entirely. Many individuals have been incorrectly dismissed or accused of exaggerating or fabricating their symptoms, and in some cases even falsely institutionalized, despite having a legitimate neurological condition. This compounded their suffering and created lasting medical trauma and mistrust toward the medical community.
Diagnosing Visual Snow Syndrome is often described as a process of exclusion. Because visual snow and its accompanying symptoms are unique and not commonly seen in clinical practice, doctors often perform multiple tests to rule out other conditions. Moreover, many of these visual and non-visual symptoms, when not recognized as part of VSS, can be mistaken for other serious neurological or eye-related conditions. This approach makes sense in theory, but it creates a dilemma in practice. For physicians unfamiliar with VSS, which is still the case for many, there is a tendency to assume they have done all they can. What happens when an eye exam comes back normal? Or when a well-meaning doctor orders a brain scan and the MRI shows nothing unusual?
Having struggled to understand what is happening to them and with no clear answers about their condition or prognosis, patients often experience uncertainty and fear, often worrying that they may go blind or face other serious outcomes, due to limited awareness and education about VSS within the medical community. In many cases, patients are even questioned by doctors about the validity of their symptoms, simply because VSS was not covered in medical school.
As a result, most people with VSS have either been dismissed by medical professionals or subjected to a series of medical tests, which can be intimidating and stressful. Extended waiting periods and repeated investigations that yield no clear findings can increase uncertainty, fear, and frustration, affecting emotional well-being while navigating this condition. Even when patients found a doctor who believed them, there was often little that could be done, leaving them without effective guidance or treatment options. Many individuals with VSS have experienced medical trauma, compounded by the mismatch between normal test results and lived symptoms.
VSI’s establishment of official Diagnostic Criteria for Visual Snow Syndrome provides a standardized tool that patients can present to doctors anywhere in the world to confirm a diagnosis. These criteria are also being adopted by medical and research professionals in their studies.
However, systemic barriers in healthcare, including differences in international regulations, lack of provider education, and uneven access to specialists, continue to create challenges. Some schools, workplaces, social and medical systems, and government structures may not fully recognize or accommodate visual, sensory, or cognitive differences, placing the burden of self-advocacy on individuals with VSS.
Navigating Daily Life and Cumulative Effects
Living with VSS often requires managing a complex combination of visual and non-visual symptoms, while also explaining the condition to others who may not understand it, including family, friends, educators, employers, and healthcare providers. This cumulative burden can impact mental health, contributing to stress, anxiety, depression, post-traumatic stress disorder (PTSD) related to medical trauma, and social isolation. Many describe VSS as creating a “barrier” or an out-of-body sensation, where visual snow, distortions, and sensory disturbances separate them from their surroundings.
Derealization (the feeling that the world around you is unreal or distorted) and depersonalization (the sense of being disconnected from yourself or observing yourself from the outside) can arise from the neurological effects and daily challenges of VSS. These experiences are often intensified by misunderstanding, inadequate support, or negative treatment from the medical community and society.
Additionally, adjusting to life with VSS can be challenging, particularly in environments that are not automatically accommodating.
VSS exists on a spectrum. Some individuals manage their symptoms effectively and can participate fully in school, work, and social activities, with or without reasonable accommodations. Others experience more severe symptoms and may require additional support, including accessing disability resources.
While published ICD-11 codes, an official diagnosis, research, clinical resources, a physician’s attestation letter, and medical documentation can help support a disability case, eligibility and outcomes often vary depending on local healthcare systems, workplace or school policies, and country-specific regulations. People with VSS often have to work harder than average to access accommodations or support because many others, including healthcare providers, educators, and employers, have never heard of their condition. Unlike more widely recognized conditions, they must advocate for themselves, explain their experiences, and navigate systems that are not designed with their needs in mind.
Many people with VSS also experience other medical conditions, which adds another layer of complexity to daily life. These additional health challenges occur on top of the persistent neurological symptoms of VSS and the everyday stresses that everyone faces. Navigating school, work, social environments, and healthcare systems can be particularly demanding in a world that is often not structured in consideration to visual, sensory, or cognitive differences.
It is important to emphasize that acquiring VSS is not in anyone’s control. It is a neurological condition, not imagined, and cannot be willed away. Individuals are already navigating a lot, and additional judgment or pressure to control their symptoms only compounds their challenges.
Isolation, Communication Challenges, and the Importance of Awareness
To understand the impact of Visual Snow Syndrome and the consequences of the medical community’s historical neglect, it is important to examine the multifactorial nature and background of VSS. Many people with VSS feel deeply isolated, especially offline, where they may not know anyone else with the condition. Even well-meaning doctors may struggle to provide answers, leaving patients feeling misunderstood or dismissed. This isolation can reinforce the sense of being a medical anomaly, as they experience and process the world differently from those around them. Isolation can be further compounded when family members or friends are unsure how to respond. Because VSS is not widely known, loved ones may unintentionally minimize symptoms or struggle to provide support, leaving patients to navigate the condition largely on their own. Even in families where VSS is present, relatives may not realize others are affected, particularly when symptoms have been present since birth, unless it is explicitly discussed.
For a condition like VSS, which involves complex neuroscience and specialized medical knowledge, it can be confusing to understand and even frightening. Searching for reliable, accurate information can be overwhelming. Many turn to online resources for support and guidance, which can help them connect with other patients. However, the online space can also contain misinformation, while legitimate medical studies are dense, highly technical, written for professionals, often fail to consider the patient’s perspective, or are locked behind paywalls. This combination leaves individuals struggling to understand what is happening to them and what methods for managing their symptoms are both safe and potentially effective, often leaving them feeling profoundly alone in navigating a condition that few fully recognize or understand.
Communicating the symptoms of Visual Snow Syndrome can be challenging for both adults and children. Many struggle to put their experiences into words, particularly because the complex visual and sensory disturbances of VSS are not part of everyday language and are often encountered for the first time by the patient. This can leave individuals feeling trapped and misunderstood by medical providers and others. These communication challenges frequently delay diagnosis and access to support, adding to the emotional burden of living with the condition.
These obstacles were some of the primary motivators behind the creation of the Visual Snow Initiative website and VSI4Kids, which serve as hubs of multifaceted information and diverse resources for individuals with VSS, families, doctors, researchers, health organizations, and educators. By providing accessible, reliable guidance, these platforms aim to empower patients and their support networks. Greater awareness among healthcare providers can help them recognize the signs of VSS earlier, validate patients’ experiences, and provide guidance and support more effectively.
VSS Is Not a Choice: Believe Them
No one chooses to have VSS. It is a neurological condition that can appear at any age, sometimes alongside other medical or neurological circumstances. Adjusting to life with VSS can be challenging, especially in environments that are not naturally accommodating. VSS exists on a spectrum: some individuals can participate in school, work, and social activities, with or without accommodations, while others experience more severe symptoms that may limit daily functioning. Both reflect the reality and variability of the condition, not a person’s effort, motivation, or potential.
The Importance and Role of Support
Living with VSS means navigating a reality that most others cannot see. Support from family, friends, healthcare providers, educators, and employers can significantly improve coping, quality of life, and resilience.
Support can take many forms. Belief and validation are fundamental, trusting that the experiences and symptoms a person describes are real.
Listening with empathy allows individuals to share their experiences without judgment or minimization. Practical accommodations, such as adjusting lighting, providing quiet spaces, allowing rest periods, or offering flexible environments, reduce sensory overload and fatigue. Education about VSS helps loved ones, colleagues, and educators understand experiences, advocate effectively, and provide informed support. Patience is critical, as symptoms fluctuate and adaptation takes time.
For healthcare providers, staying informed about VSS, acknowledging it as a legitimate neurological condition, and recognizing that validation alone can be profoundly helpful is essential. Schools, workplaces, and social systems can create environments where individuals with VSS thrive by implementing accommodations, practicing empathy, and maintaining consistent communication.
Being considerate means recognizing that VSS cannot be controlled or willed away. Individuals may use sunglasses indoors, earplugs/headphones, or other strategies to mitigate sensory input. As long as these accommodations do not harm others, they should be respected. In environments with bright lights or visual triggers, asking what someone needs, whether a hand, a quiet space, or simply to be left alone, can make a meaningful difference. Communication is key, and if someone prefers to cope privately, that choice should be honored. Professionals who adjust policies and environments to be inclusive will see improved outcomes and overall wellbeing for everyone.
My Personal Perspective on VSS and How Kindness Can Inspire Change
My journey with Visual Snow Syndrome was profoundly isolating, life-altering, and traumatizing. While the onset of VSS itself may have been unavoidable, much of the additional distress could have been mitigated had there been awareness, education, and resources available at the time. My symptoms were so severe that I could no longer drive, attend school, or work. Even the world around me, the faces of loved ones, the beauty of a sunset, became disorienting and overwhelming, almost nightmarish.
Compounding these neurological challenges was the response of the medical community. Many doctors doubted me, and those who believed me often did not know how to help. Inconclusive test results, accompanied by comments suggesting I might go blind or die, left me in constant fear. Explaining my condition to others, whether socially or medically, was exhausting and often met with misunderstanding, ignorance, or insensitivity.
Amid these challenges, I was fortunate to have a father who believed in me. Though he had never heard of VSS, he educated himself, tried his best to understand my experience, and offered emotional support, helping lay the foundation for the Visual Snow Conference and the Visual Snow Initiative. Without his support, I may never have been able to channel my personal struggles into advocacy, research, and resources for others living with VSS.
Evidence-based interventions identified by VSS researchers, alongside lifestyle adaptations, have helped improve my condition. I ultimately returned to finish my degree at school and continued to work advancing VSI’s mission while managing my VSS and other lifelong health challenges, such as Erythromelalgia and Autoimmune Dysregulation. His support exemplifies the impact of empathy and understanding and shows me how acts of kindness can make a significant difference.
This letter is for everyone, especially those who know someone affected by VSS, but also for him, to thank him for his belief in me and care. When I could not be my own hero, he was there for me. His encouragement gave me the strength to continue through the worst days of VSS and inspired me to advocate for myself and others worldwide of all ages facing similar struggles. My father exemplifies that compassion, patience, and understanding can profoundly impact someone’s ability to navigate difficult circumstances.
The Role of Awareness, Empathy, and Practical Support in Improving Life for People with Visual Snow Syndrome
Living with Visual Snow Syndrome can mean experiencing the world differently from others. Having a medical condition should never be stigmatized. Everyone faces health challenges at some point or knows someone who does. Supporting someone does not require grand gestures; it starts with awareness, empathy, and thoughtful consideration. Even as scientific understanding and advocacy for VSS progress, the understanding, patience, and accommodations of those around individuals with VSS remain vital. In addition to treatment strategies and research, believing individuals with VSS, practical adjustments, fostering connection, and ongoing education about what they are going through can also help them feel more supported in daily life.
Providing support involves knowledge, attention, and consideration. Staying informed helps others understand what someone with VSS is experiencing and respond appropriately. Listening without judgment, asking which accommodations might help, and respecting an individual’s chosen coping strategies or treatment approaches based on personal preferences or medical history as long as they are not harmful can make a meaningful difference. Whether that means wearing tinted glasses indoors, using earphones to reduce sensory input, or stepping away from visually overwhelming environments, practical adjustments can provide comfort.
Let empathy guide your actions rather than convention or expectation. In professional, educational, or social settings, accommodating neurological differences benefits not only the individual but also fosters a more compassionate and effective environment for everyone. International health systems and medical professionals also benefit from staying current with research, ensuring better health outcomes and supporting society as a whole.
If you are comfortable doing so, consider reflecting on your own experiences of struggle. Was someone there to encourage, comfort, or guide you? If so, consider the impact their support had on you. If not, think about what you needed at that time and offer that understanding to others. Even more effective is to ask directly how you can help, recognizing that each person’s experience with VSS and their individual needs are unique. Every act of validation, empathy, advocacy, research, or practical assistance can impact the daily experience of someone living with VSS. Compassion, education, and thoughtful consideration enable individuals with VSS to navigate life with greater confidence, safety, and well-being, fostering connection, resilience, and hope as they face challenges. By combining understanding, empathy, and practical support, we can help people of all ages worldwide with VSS feel seen, respected, and more empowered.
The Human and Scientific Imperative of VSS
Just as the medical community once denied the existence of VSS, leaving research, resources, exploration of treatment options, and understanding limited or nonexistent, this landscape is now changing. Research on VSS has grown substantially, exploring visual and non-visual symptoms, biomarkers, and underlying pathophysiology, while treatment options are being established and resources are becoming increasingly accessible thanks to the efforts of patients, advocates, and researchers. This progress demonstrates that continued advocacy and collaboration can further advance knowledge, improve care, and expand both practical and emotional support.
In tandem, as rigorous research continues, some developments may be feasible in the short term while others will require longer-term efforts due to technological, knowledge-based, and systemic limitations within academia and medicine. Providing validation, patience, accurate information, and encouragement helps individuals with VSS navigate these challenges while fostering greater engagement with ongoing research and clinical developments.
VSS affects vision, daily life, mental health, and self-perception, leaving many patients feeling isolated, anxious, or frustrated when their experiences are misunderstood or dismissed. By speaking up, fostering dialogue, and standing alongside patients, we can validate their experiences, provide guidance and encouragement, and address the real-world impacts of the condition as they unfold daily, for the benefit of both science and humanity.
As someone who lives with Visual Snow Syndrome and works closely in this field, I speak from experience: this condition is real, and its widespread impact and unmet needs, with potentially devastating consequences, should not be ignored. Millions of people of all ages are affected worldwide, and as awareness grows, even more will come to recognize that they, too, live with VSS. I did not wait for the medical community to acknowledge it; I began advocating because the reality of this condition demanded attention.
Science and medicine should be guided by rigor, insight, and integrity. Delaying recognition and understanding allows unnecessary suffering to continue and leaves medical practice behind.
Family members, friends, educators, and workplaces should not wait for a crisis. Ask, listen, and provide the support that people with VSS need.
Organizations and institutions should recognize this condition, ensure access to qualified professionals, and commit to understanding and addressing the needs of this community.
Imagine for a moment that this was your reality. How would you wish to be met, with understanding, patience, and care that truly listens?
Remember that VSS could impact you, someone you love, or someone you know if it has not already.
Let us meet those living with VSS with empathy, respect, and thoughtful recognition of their experiences, honoring both the difficulties they face and the strength they show every day.
Newfound Progress, Resources, and Research from the Visual Snow Initiative
The Visual Snow Initiative (VSI) has pioneered a range of initiatives to advance understanding of VSS and develop tools for those affected. These include a global video support group connecting people with VSS, the VSS Diagnostic Criteria developed by VSI’s Global Research Team, and an international directory of physicians with knowledge of the condition. VSI has also developed a wide range of resources for both patients and professionals. These include a patient guide on symptoms and management strategies, a Visual Snow Syndrome (VSS) simulator, and initiatives like “Warrior of the Week” that highlight patient experiences. Educational materials are available in multiple formats, including FAQs, brochures, multimedia content, and a comprehensive website consolidating the latest research and updates. VSI also organizes the Visual Snow Conference, offers physician-patient resources, and provides globally accessible, evidence-based modules and courses designed to alleviate symptoms and educate healthcare professionals through collaborative efforts. For children and adolescents, VSI4Kids offers age-appropriate guidance for young patients, their parents, and schools. VSI had created these resources based on established and emerging scientific research, updating them as new findings become available. Research into Visual Snow Syndrome is a long-term endeavor and has been groundbreaking for the field. VSI researchers have identified potential biomarkers, explored neural network mechanisms, established clinical criteria and symptom profiles, and investigated evidence-based approaches to understanding and managing the condition.
Ongoing research supported by VSI continues to advance understanding of VSS and explore potential treatments, including advanced brain imaging, non-invasive neuromodulation techniques, targeted medications, neuro-optometric rehabilitation (NORT), mindfulness-based therapies influencing brain networks involved in vision, attention, and sensory processing (MBCT-Vision), chromatic filters, precision-tinted lenses, and genetic studies.
These efforts, informed by clinical research, neurological imaging, and patient-reported outcomes, aim to improve symptom management, enhance quality of life, and ultimately guide long-term research toward a potential cure.
While these advances are unprecedented, the daily lives of individuals with VSS are still shaped by empathy, validation, and practical accommodations. Scientific progress does not erase our awareness for the decades of misunderstanding, misdiagnosis, and systemic barriers they have faced. Compassion, acknowledgment, and practical support remain essential for helping people with VSS thrive.
– Sierra Domb