Sierra Domb’s Testimony to Get Visual Snow Syndrome Recognized by the World Health Organization, ICD-11
Introduction
Sierra Domb, Founder of the Visual Snow Initiative, is currently advocating alongside Dr. Peter Goadsby and Dr. Owen White for the inclusion of Visual Snow Syndrome (VSS) in the International Classification of Diseases (specifically, ICD-11). Maintained by the World Health Organization (WHO), the International Classification of Diseases, or ICD, is a standardized system healthcare providers around the world use to classify and code medical conditions, diseases, and injuries. The ICD is a critical tool for clinicians to diagnose, monitor, and treat patients. Including VSS in the ICD would significantly benefit VSS patients, healthcare providers, and researchers. This may include getting VSS patients eligibility for insurance coverage and financial support, a cause that has always been deeply personal and important to Sierra Domb since she founded VSI in 2018.
To learn more about the benefits of an ICD code for Visual Snow Syndrome, please click here.
The Time is Now: Why VSS Deserves an ICD Code
Currently, Visual Snow Syndrome does not have its own ICD code. Until now, VSS has been classified as “Unspecified Visual Disturbances”, “Unspecified Subjective Visual Disturbances”, or “Other Visual Disturbances”. Sierra Domb is adamant that these labels do not do Visual Snow Syndrome justice.
Visual Snow Syndrome has gained significant academic, clinical, and scientific legitimacy in recent years. Although we have achieved monumental progress, awareness, and advancements in identifying, understanding, and treating VSS, an ICD-code for VSS would be a game-changer. This is necessary in order to further reduce the prevalence of marginalization, misdiagnosis, and mistreatment that people with VSS often have to endure.
Before starting Visual Snow Initiative, when physicians asked Sierra Domb about the symptoms she was experiencing, most of them did not believe her. This was due to lack of research to substantiate VSS, as well as a lack of academic, clinical, and scientific recognition for this syndrome. Since she founded Visual Snow Initiative, Domb has wanted to get VSS its own ICD code, ensuring that the condition would get global recognition and VSS patients could receive proper resources/financial support. However, she was told by professionals that without funding for more research, VSS may never be eligible for an ICD code (30-50 years if they were lucky, as this is the timeframe for many other medical conditions).
Domb remained unwavering in her pursuit of an ICD code for VSS, advocating and collaborating alongside VSS experts to produce funding, awareness, education, resources, research, and treatment options for VSS. Thanks to everyone’s collective efforts, tremendous strides have been made in all these areas. VSS now has a chance of being recognized. VSS experts agree with Domb that there is enough evidence and awareness to justify why VSS should receive its own ICD code.
“Not having an ICD code means that people with VSS cannot be treated equally compared to those who have an ICD code for their medical condition. The absence of an ICD code for VSS also problematically contributes to the stigma that any suffering associated with VSS is simply “all in your head”, an archaic stigma we have worked so hard to overcome. VSS is a real, distinct, and measurable neurological phenomenon with its own name. This was proven by international researchers and substantiated via the scientific studies we funded. The absence of an ICD code for VSS harmfully perpetuates doubt and primitive notions. It also continues to create barriers for VSS patients to receiving proper care they deserve. This poses a serious risk to their (physical and mental) health.”
Sierra Domb: My Supporting Testimony for the Inclusion of VSS in the ICD-11, Submitted to the World Health Organization
Sierra Domb recently submitted her supporting testimony to the World Health Organization, advocating for the inclusion of VSS in the ICD-11.
“In 2015, at 21 years old, my life changed in an instant. As I was driving to university, suddenly, my vision went black. Thankfully, I instinctively pulled my car over to avoid a crash and the darkness only lasted for a moment. But when my vision returned, the world did not look the same. My entire visual field was overwhelmed by a frightening overlay of flashing lights and moving particles, which resembled dense television static, or “white noise”. This static overlay was unceasing, persisting 24/7 whether my eyes were open or closed. I would later discover this visual phenomenon had a name: “Visual Snow”. In the days that followed, other visual and non-visual symptoms appeared, including palinopsia, photophobia, enhanced entoptic phenomenon, diplopia, photopsia, tinnitus, and derealization.
Due to the debilitating nature of my symptoms, I was forced to stop attending university. I could no longer see, work, drive, or function normally. Fearful I was going blind (or worse), my family and I sought help from dozens of doctors and specialists at many renowned medical institutions. But no one could offer an explanation, let alone a diagnosis. Over the next year and a half, I was subjected to intrusive, costly, and unnecessary medical tests, most of which focused on my eyes. My tests always came back normal. After my medical tests revealed nothing, some doctors simply told me to “get on with your life”, as though they no longer believed me. One doctor even referred me for a psychiatric evaluation. With my own doctors doubting me and no answers, I lived in constant fear and isolation.
I realized it was up to me to figure this out. I soon located an article published in a well-known medical journal that described my symptoms with astonishing precision. The article described a medical condition called Visual Snow Syndrome, which can manifest suddenly. Visual Snow Syndrome (VSS) is a neurological disorder, which explains why all the tests on my eyes came back normal. Visual Snow Syndrome can affect vision, hearing, cognition, sensory processing, and quality of life. There is no cure. However, I learned that VSS would not kill me, nor would it cause me to go blind.
Soon, it became clear that I was not a medical outlier. My story mirrors that of thousands of people around the world. People of all ages and backgrounds worldwide are affected by VSS. Many have embarked on medical odysseys much like my own. They are distraught from being marginalized, misdiagnosed, and/or not diagnosed. Many are left isolated and traumatized, some to the point of suicide due to the severity of their symptoms and the lack of acknowledgment of the reality and seriousness of their condition by many in the medical community.
I knew further awareness, education, research, and solutions for VSS were necessary. In 2018, I organized the first Visual Snow Conference at the University of California, San Francisco. Doctors, researchers, and scientists with knowledge of Visual Snow Syndrome flew in from Australia, Canada, England, and various cities in the United States. The Visual Snow Conference was free to the public. After remarks from myself and international VSS experts, the audience, made up primarily of VSS patients and their families, fell silent as they were validated and acknowledged for the first time in their lives.
Shortly after the conference, I founded the nonprofit organization, Visual Snow Initiative (VSI), which is dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS. Every day since then, my team and I have worked diligently to facilitate collaboration between physicians and academic institutions, develop solutions alongside researchers, make neuroscience more palatable for everyone regardless of age or health literacy, raise awareness for VSS via multimedia content, and help people with VSS worldwide.
Academics and researchers have identified measurable differences in the brains of those with VSS. Data has also revealed that VSS symptoms are not a manifestation of anxiety and depression. Instead, the debilitating nature of VSS symptoms coupled with the medical community’s historic marginalization of VSS patients can profoundly and negatively impact their mental health. VSS is a distinct neurological disorder that entails both visual and non-visual symptoms.
To date, my nonprofit has heard from people affected by VSS in 93 countries. With rising awareness and education for VSS, the number of people we have been able to reach grows daily. Inclusion of Visual Snow Syndrome in the ICD-11 will provide recognition, legitimacy, and a huge stimulus for this condition’s identification, and amelioration, as well as the necessary research to diagnose and treat it. This will give a voice to a whole community of patients around the world who have tried in vain to be heard.”
All the best,
Sierra Domb
Founder & CEO
