Sierra Domb: ICD Update for Visual Snow Syndrome, Proposal Status, & List of Advocates

Introduction

This update is a follow-up to the articles: “Sierra Domb, Visual Snow: World Health Organization & ICD-11 Testimony” and “Sierra Domb Explains The Importance Of Including Visual Snow Syndrome In The International Classification Of Diseases“.

The Visual Snow Initiative (VSI) team and I are working diligently towards our goal of getting Visual Snow Syndrome (VSS) its own ICD code, a cause which has been deeply important to me since founding VSI with the potential to benefit VSS patients, healthcare providers, and researchers worldwide. The International Classification of Diseases (ICD) is a global standardized system that healthcare providers use to classify and validate medical conditions, diseases, and injuries. Maintained by the World Health Organization (WHO), the ICD is a critical tool for public health, helping clinicians diagnose, monitor, and treat patients worldwide. Getting VSS is in the ICD will give the condition official, legal medical and scientific recognition. Alongside Dr. Peter Goadsby and Dr. Owen White, I have been working to pursue this goal, one which we were told would not have been possible several years ago.

When I first started VSI in 2018, medical professionals and scientists maintained that due to lack of evidence, a condition like VSS may never be eligible for an ICD code. We were told it may be possible in “30-50 years”, but that was only “if we’re lucky” and more awareness, education, and research were generated. As I painstakingly learned, this is sadly often the timeframe in which many other complex and marginalized medical conditions, like VSS, achieve recognition — if they do at all. I founded VSI to rectify these issues and advocate on behalf of people with VSS, many of whom, like myself, have suffered as a direct result of the medical community being uninformed about VSS.

Over the years, this increase in awareness, education, and research for VSS has led to substantial academic, clinical, and scientific acceptance for the condition. While there is still a ways to go, in light of recent scientific evidence, the establishment of clinical criteria, and accounts from thousands of VSS patients worldwide, even the many former-non believers who once doubted its legitimacy now understand that VSS is a real, distinct neurological disorder. (Nonetheless, it is still imperative to spread further education about VSS, especially within the medical community, to improve the quality of care for VSS patients, as many healthcare providers are still uninformed about the condition; this is an issue which an ICD code for VSS will also help address.)

With the progress achieved to date, VSS may now have a chance to get its own ICD code. 

Update

The fate of VSS obtaining an ICD code is dependent upon a lengthy and rigorous process that entails the submission of a proposal on behalf of experts in the field, supporting testimonies from medical/scientific professionals, extensive reviews, and voting from various WHO advisory groups, specifically the Medical Scientific Advisory Committee (MSAC) and the Classification and Statistics Advisory Committee (CSAC).

I am happy to share our proposal, with supporting testimonies, advocating for the inclusion of Visual Snow Syndrome in ICD-11 has been submitted to the World Health Organization and is currently under review.

If the proposal is approved, then Visual Snow Syndrome (VSS) will finally have its own ICD code. This achievement will lead to global medical and scientific recognition for VSS, eligibility for insurance coverage and financial support, increased awareness, as well as standardization for global research, data collection, analysis, diagnosis, and treatment of the condition. 

For everyone with VSS who was turned away by the medical community, marginalized, mistreated, misdiagnosed, left to suffer without hope, and told “VSS is not real” or their symptoms were “all in their head”, achieving this ICD code will prove that VSS was a real medical condition all along. If approved, then henceforth, VSS will be globally recognized and legally cemented in the fields of medicine and science as a legitimate, distinct neurological disorder.

We will continue to provide updates on the status of the proposal as we receive them.

Thank you so much to everyone for your ongoing patience and support!

Additionally, thank you to the medical professionals who kindly submitted supporting testimony for the proposal! (See below for more information.)

List of Advocates 

The proposal was spearheaded by Sierra Domb, Dr. Peter Goadsby, and Dr. Owen White.

Supporting testimony, necessary and important to the approval process, was submitted by:

• • Sierra Domb – Founder & CEO, Visual Snow Initiative

• • Prof. & Dr. Peter Goadsby – Winner of the 2021 Brain Prize, Director of the National Institute for Health Research – Wellcome Trust King’s Clinical Research Facility, Professor of Neurology at King’s College London and UCLA

• • Prof. & Dr. Owen White – Clinical Director Ocular Motor Laboratory, Central Clinical School, Monash University, Victoria, Australia

• • Dr. Francesca Puledda – Neurologist, post-doctoral research, Headache Group, King’s College London, London, England

• • Prof. & Dr. Christoph Schankin – Department of Neurology, Inselspital, Bern University Hospital, University of Bern

• • Dr. Sui Wong – Consultant neurologist and neuro-ophthalmologist, Guy’s and St Thomas’ NHS Foundation Trust, Moorfields Private Eye Hospital

• • A/Prof & Dr. Clare Fraser – MBBS, MMed, FRANZCO
    Organisation, Save Sight Institute, The University of Sydney, Associate Professor of Neuro-ophthalmology, Sydney, Australia

• • A/Prof & Dr. Carrie “Beth” Robertson – Department of Neurology, Mayo Clinic, Rochester, Minnesota

• • Prof. & Dr. Kathleen Digre – Neurology and Ophthalmology, University of Utah, Former President and current board member of the American Headache Society

• • Isobel Hay – NHS Dumfries and Galloway, Pediatrics

• • Dr. Prem Subramanian – MD, PhD, NANOS President

• • Toma Kinville-Ossian – NANOS Executive Director

More Information 

The following information is originally from the article, Sierra Domb, Visual Snow: World Health Organization & ICD-11 Testimony.

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

Sierra Domb: My Supporting Testimony For The Inclusion Of VSS In The ICD-11, Submitted To The World Health Organization

“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

Visual Snow Initiative

Benefits of an ICD Code for VSS

Research and Clinical Trials

Researchers use ICD-11 codes to categorize and analyze data in clinical trials and research studies. The use of standardized codes allows for the aggregation of data from multiple sources, supporting the development of evidence-based medicine.

Patient Safety

Accurate and standardized coding using ICD-11 is essential for patient safety. It helps healthcare providers communicate effectively, reducing the risk of errors and ensuring that patients receive appropriate and timely care.

Insurance and Reimbursement

ICD-11 codes are crucial in health insurance reimbursement systems. Proper coding using ICD-11 allows for accurate billing and reimbursement for healthcare services.

Standardized Classification and Coding of Medical Conditions

ICD-11 offers a standardized and internationally recognized system for classifying medical conditions. Having a specific ICD-11 code ensures consistency in how health conditions like VSS are documented and communicated, facilitating a common language among healthcare professionals globally.

Improved Data Accuracy and Clinical Documentation

The use of ICD-11 enhances the precision and specificity of clinical documentation. This is crucial for accurately describing a patient’s health status, facilitating better communication among healthcare providers, maintaining reliable health records, supporting clinical decision-making, contributing to high-quality patient care, and ensuring appropriate reimbursement for healthcare services.

Epidemiological Surveillance and Research

ICD-11 codes play a crucial role in epidemiological surveillance and research. Health organizations and researchers use these codes to track the prevalence, incidence, and distribution of medical conditions over time and across populations. This information is vital for public health planning, interventions resource allocation, and policy development.

Global Health Statistics

ICD-11 is a key tool for generating global health statistics. It helps in comparing health data across countries and regions, facilitating international collaboration and the sharing of health information.

Health Information Systems

ICD-11 is integrated into health information systems and electronic health records (EHRs). Having standardized codes in these systems improves interoperability, data exchange, and the overall efficiency of healthcare information management.

Clinical Decision Support

Healthcare providers use ICD-11 codes to support clinical decision-making. The codes help in accurately documenting a patient’s health condition, which, in turn, assists healthcare professionals in making informed decisions about diagnosis, treatment, and ongoing care.

Public Health Policy and Planning

Governments and healthcare organizations use ICD-11 for public health policy development and planning. It assists in identifying health priorities, allocating resources effectively, and developing strategies to address specific health challenges.

Advancements in Medical Science

ICD is regularly updated to reflect advances in medical science and changes in disease patterns. ICD-11 includes improvements over its predecessor, ICD-10, and is designed to capture the evolving understanding of health conditions.

Click here to learn more and read Sierra’s WHO testimony to get VSS included in ICD-11.