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Sierra Domb is currently collaborating with Dr. Peter Goadsby and Dr. Owen White on the inclusion of Visual Snow Syndrome (VSS) in the ICD-11. Developed and maintained by the World Health Organization (WHO), the International Classification of Diseases, 11th Revision (ICD-11) is a globally recognized system for recording and classifying medical conditions, diseases, and injuries. The ICD is used by healthcare providers, researchers, policymakers, and public health officials worldwide. Its use extends across various domains, including clinical care, research, public health, policy development, and health information management. The ICD contributes to improved healthcare outcomes, global collaboration, and understanding of health trends worldwide.

If VSS obtains an ICD code, this milestone would have numerous significant, positive outcomes for individuals affected by VSS, as well as the global scientific and medical communities. VSS would finally be solidified as a legally recognized, legitimate, and distinct neurological disorder. In addition, healthcare services related to VSS can become eligible for insurance coverage and reimbursement. Given the high prevalence of marginalization and misdiagnosis, which results in trauma, that most people with VSS have had to endure, this vindication will help establish a brighter future with better healthcare outcomes for VSS patients.

Sierra Domb acknowledges the layers of bureaucratic steps and hurdles that have to be overcome before any medical condition, disease, or injury can be designated with an ICD code. Many medical conditions never get one, especially if the condition and patient population have a history of being ignored or misunderstood within the medical community. Upon the submission of an ICD proposal by experts in the field, supporting testimonies, thorough reviews, and numerous steps of voting, then it is determined whether or not a code will be given to a specific condition. The WHO oversees the development and maintenance of the ICD but relies on input from member countries and health professionals.

Sierra Domb recently shared that the ICD-11 proposal for VSS had been submitted and was awaiting review. It is reported that the proposal for Visual Snow Syndrome is currently being reviewed and voted on by medical and scientific personnel assigned by the World Health Organization (WHO), specifically the Medical Scientific Advisory Committee (MSAC). If approved, the proposal will move on to the final phase, being voted on by the Classification and Statistics Advisory Committee (CSAC), who will be the final determiners if VSS gets an ICD code. Sierra Domb expresses gratitude for the patience and support received and promises to continue providing updates throughout the process.

For the latest updates and developments on VSI, as well as additional information about Sierra Domb’s contributions, please read “ICD CODE FOR VISUAL SNOW SYNDROME: NEXT PHASE, MSAC VOTING” for more information regarding ICD Updates.

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