Visual Snow Syndrome and Visual Snow Now Have ICD-11 Codes: A Historic Achievement by the Visual Snow Initiative (VSI)
The World Health Organization (WHO) has officially classified Visual Snow Syndrome (VSS) and Visual Snow (VS) in the International Classification of Diseases, 11th Revision (ICD-11), with designated ICD codes and classifications. This historic achievement represents a significant advancement in the global recognition of VSS, a condition that has long been marginalized within the scientific and medical communities despite its validity. The classification was made possible through the efforts of the Visual Snow Initiative (VSI), which was founded by Sierra Domb, whose advocacy and leadership were crucial in securing the ICD codes, in collaboration with Dr. Peter Goadsby and Dr. Owen White.
ICD-11 Codes for Visual Snow Syndrome and Visual Snow
According to the WHO-FIC Foundation’s International Classification of Diseases, 11th Edition (ICD-11):
Visual Snow Syndrome (VSS):
- ICD Code: 9C4Y (Specified disorders of the visual pathways or centers)
- Categorical Classification: Specified Disorders of the Visual Pathways or Centers
- Description of Classification: These disorders involve central nervous system structures responsible for processing visual details, enabling non-image-related visual functions, and more.
Definition of Visual Snow Syndrome: Visual Snow Syndrome (VSS) is a neuro-ophthalmological condition with both visual and non-visual symptoms. According to the WHO-FIC Foundation, VSS is diagnosed based on a history of persistent visual disturbances lasting more than three months, characterized by continuous, dynamic tiny dots across the visual field, along with at least two of the following symptoms: photophobia, palinopsia (moving or stationary), blue field entoptic phenomena, and nyctalopia. VSS is frequently associated with disturbances in central sensory processing, including migraine, tinnitus, vestibular dysfunction, migratory paraesthesia, and dissociative symptoms such as depersonalization and derealization.
Visual Snow (VS) – The Symptom:
- ICD Code: MC1Y (Other specified symptoms or signs involving the visual system)
- Categorical Classification: Specified Symptoms, Signs, or Clinical Findings Involving the Visual System, specifically Visual Disturbances
- Description of Visual Snow: Visual Snow (VS) is characterized by persistent, innumerable dots throughout the visual field, similar to static on an analog television. These tiny dots may appear transparent, black and white, or colorful and often flicker dynamically.
These classifications establish a standardized framework for diagnosis, research, and healthcare management worldwide.
The Impact of ICD-11 Classification
The inclusion of Visual Snow Syndrome and Visual Snow in ICD-11 is a pivotal development that improves medical recognition, access to care, and research opportunities.
Potential Benefits for Patients
- Official Recognition: Establishes VSS as a formally classified condition, reducing medical skepticism and increasing acknowledgment.
- Improved Diagnosis & Access to Care: Provides clear diagnostic criteria, reducing misdiagnoses and ensuring appropriate referrals to specialists such as neurologists and neuro-ophthalmologists.
- Potential Insurance Eligibility: Facilitates insurance potential coverage for consultations, diagnostic tests, and treatments, reducing financial burdens.
- Advancement of Treatment Development: Encourages pharmaceutical research and clinical trials for targeted treatments.
- Stronger Patient Advocacy & Resources: Enhances the ability to advocate for improved medical care and awareness campaigns.
Potential Benefits for Doctors & Healthcare Providers
- Standardized Diagnosis & Treatment: Establishes clear criteria to differentiate VSS from other conditions.
- Increased Medical Awareness: Ensures VSS is integrated into medical education and clinical guidelines.
- Insurance & Billing Support: Enables proper documentation for billing and insurance claims.
- Guided Treatment Approaches: Facilitates structured management strategies for VSS.
Potential Benefits for Researchers & Public Health
- Epidemiological Studies: Enables accurate tracking of prevalence, risk factors, and comorbidities.
- Increased Research Funding: Justifies institutional and governmental funding for VSS research.
- Improved Clinical Trials: Establishes standardized inclusion criteria for studies.
- Global Collaboration: Supports international research initiatives on Visual Snow Syndrome.
Sierra Domb’s Leadership in Achieving Recognition
The Visual Snow Initiative (VSI), founded by Sierra Domb, played a critical role in securing this recognition. Under her leadership, VSI aimed to prevent future generations from facing the same medical skepticism and misdiagnosis that she personally experienced. For years, the lack of knowledge and acknowledgment in the medical community has left individuals with VSS marginalized, misdiagnosed, and mistreated, exacerbating their debilitating symptoms.
Since its inception, VSI has worked to advance awareness, education, and research for Visual Snow Syndrome. By uniting experts in neurology, neuro-ophthalmology, neuro-optometry, and neuroscience, VSI has significantly contributed to the evolving understanding of VSS and its inclusion in ICD-11.
“This achievement is a testament to the resilience of those living with Visual Snow Syndrome and the power of collective advocacy,” said Sierra Domb, Founder of VSI. “With this official classification, we are taking a historic step toward improving recognition, resources, and research for those affected by VSS worldwide.”
A Transformative Milestone for VSS
For the first time, Visual Snow Syndrome has been officially recognized in an international medical coding system, fundamentally changing its status within the medical and scientific communities. This milestone signifies not just administrative progress but a profound shift in how VSS is perceived, diagnosed, and managed.
As ICD-11 continues to gain global adoption, it lays the groundwork for advancing future care, enhancing clinical understanding, and improving accessibility for those affected by VSS. For more information on Visual Snow Syndrome, updates, and resources, visit the Visual Snow Initiative (VSI) at www.visualsnowinitiative.org.
