Sierra Domb Leads Visual Snow Initiative to Historic ICD Code for Visual Snow Syndrome: WE DID IT!
Official Verdict
The Visual Snow Initiative (VSI) has successfully completed the final phase of its mission to secure the first-ever official and designated ICD codes for both Visual Snow Syndrome (VSS) and Visual Snow (VS). Led by founder Sierra Domb, VSI collaborated closely with Dr. Peter Goadsby and Dr. Owen White to advocate for the inclusion of VSS and VS in the latest edition of the International Classification of Diseases (ICD-11), maintained by the World Health Organization (WHO).
Sierra Domb was the driving force and unifying leader behind the effort to secure an ICD code for Visual Snow Syndrome, initiating, coordinating, and guiding the entire process while providing advocacy and testimony at every stage. (For more information on Sierra’s advocacy and supporting testimony to secure an ICD code for VSS, please click here.) Dr. Peter Goadsby authored and officially submitted the written proposal, while Dr. Owen White collaborated with Dr. Goadsby and Sierra, contributing to the proposal’s development. The efforts of Sierra Domb, Dr. Peter Goadsby, and Dr. Owen White have successfully secured official ICD codes for both Visual Snow Syndrome (the condition) and Visual Snow (the symptom).
Although many medical conditions take several decades to receive an ICD code, she was initially told it would take at least 30 years “if she was lucky.” Despite this, Sierra Domb remained resolute in her efforts, working alongside Dr. Peter Goadsby and Dr. Owen White to successfully secure ICD codes for both Visual Snow Syndrome and its hallmark symptom, Visual Snow, in just two years.
Sierra, Founder of the Visual Snow Initiative, stated upon being notified of this historic milestone:
“The World Health Organization’s Classification and Statistics Advisory Committee (CSAC) has officially approved our proposal, assigning distinct ICD codes to both Visual Snow Syndrome (VSS)—a neurological condition with both visual and non-visual symptoms—and Visual Snow (VS), the specific symptom characterized by persistent snow-like static visible across the entire visual field, whether the eyes are open or closed. Beginning in 2025, VSS and VS will be formally included in the latest edition of the International Classification of Diseases (ICD-11). This landmark approval not only affirms our long-held belief that VSS and VS are real and significant medical conditions but also, for the first time in history, provides official and legal recognition of their scientific and medical legitimacy on a global scale—forever.“
Global Significance: What Does This Mean?
Securing an ICD (International Classification of Diseases) code for Visual Snow Syndrome (VSS) will be a game-changer for the global medical community’s ability to correctly diagnose, advise, and treat VSS patients. Additionally, this official ICD code for VSS will significantly enhance worldwide efforts in research, treatment development, education, and awareness, while fostering greater acceptance within the medical community and society at large. Inclusion in ICD-11 will increase access to targeted research initiatives, facilitating the development of additional diagnostic tools and advanced treatment options specifically designed to meet the unique needs of VSS patients.
Crucially, an ICD code will facilitate comprehensive insurance coverage and financial support, ensuring patients can access necessary care and treatments without the burden of excessive medical expenses.
Moreover, having an ICD code for VSS will empower healthcare providers to make more informed clinical decisions, enhancing the accuracy and effectiveness of the care they deliver. This recognition directly contributes to improved global health outcomes, supports the financial stability and quality of life for affected patients, and expands resources for researchers through accurate data collection and increased global study opportunities. (For a comprehensive list of the benefits of securing an ICD code for VSS, please click here.)
Sierra Domb states:
“Individuals with Visual Snow Syndrome (VSS) can no longer be dismissed or told their condition does not exist. For everyone who has been marginalized, misdiagnosed, mistreated, and misunderstood—including myself—since the condition was first documented in 1944, and likely long before, 2025 represents a pivotal moment. This historic achievement, marked by the official designation of ICD codes for both VSS and VS, an official diagnosis, and global recognition from the medical and scientific communities, is both a groundbreaking milestone and a profound vindication for everyone impacted by VSS.“
Through Adversity and Effort, a Longtime Mission Realized
Securing an ICD code for Visual Snow Syndrome (VSS) has been one of the primary objectives of our Founder, Sierra Domb, since she established the Visual Snow Initiative (VSI) in 2018. Sierra often expressed her hope to one day collaborate with the World Health Organization (WHO) to achieve this goal. After her life was profoundly altered by the onset of VSS in 2015, Sierra experienced severe visual and non-visual symptoms that drastically affected her quality of life. Adding to this hardship was the lack of recognition or understanding of VSS by the majority of the medical community, leaving patients like Sierra without resources, support, or hope.
Sierra soon realized that her struggle was shared by countless others, representing an estimated 2–3% of the global population affected by VSS. Motivated to create change, she founded VSI in 2018 to develop solutions and advocate for those impacted by the condition—securing an ICD code being one of her most significant ambitions. (For more information on Sierra’s journey with VSS and the results of her efforts, please click here.)
Collaborative Global Advocacy
This historic achievement was made possible through the collective efforts of our team and the collaboration of medical professionals and researchers, including Sierra Domb, Dr. Peter Goadsby, and Dr. Owen White. Despite being told that securing an ICD code for Visual Snow Syndrome (VSS) might be “impossible” or could take “30–50 years with luck,” we remained steadfast in our mission to advocate for recognition and legitimacy for VSS.
This progress reflects a coordinated effort to bridge the gap between patients and the medical community. By funding scientific research that demonstrated the neurological basis, pathophysiology, symptomatology, and network mechanisms of VSS, developing educational resources, and fostering dialogue between patients and healthcare providers about VSS, we sought to raise awareness and build a stronger understanding of this condition. These initiatives helped to present VSS as a significant and real medical condition, meriting formal recognition.
The collaboration of experts, researchers, and clinicians was instrumental in building a compelling case for the World Health Organization (WHO). Through shared expertise and critical testimonies, the proposal gained the support necessary for its success. We are very grateful to everyone who contributed their knowledge, advocacy, and support throughout this process, which marks a meaningful step toward improved recognition and care for those affected by VSS. (For a full list of everyone who submitted supporting testimonies to the WHO, please click here.)
Thank You
Sierra Domb and the VSI team extend their heartfelt gratitude to the World Health Organization’s committee members for their unanimous approval of ICD codes for both Visual Snow Syndrome (VSS) and Visual Snow (VS). We also deeply thank everyone who has supported and continues to support VSI in our ongoing mission to improve the lives of those affected by VSS.
Congratulations to all those impacted by VSS on this historic and monumental achievement—this is a huge victory for everyone!
