Sierra Domb Q&A – Part 3 – Activism, Educating Others About Visual Snow, & More

Q 1: Do you have any ICD-11 updates?

Q 2: What is the process of trying to get an ICD Code for VSS like?

I am sharing all updates regarding our mission to get an ICD code for Visual Snow Syndrome on my personal website, www.sierradomb.com, and the Visual Snow Initiative website, www.visualsnowinitiative.org.

The International Classification of Diseases (ICD) is maintained by the World Health Organization (WHO). They require the submission of a proposal, which justifies why the medical condition you are advocating for deserves its own code. Intensive supporting evidence in the form of research studies and testimonies from experts on the condition specifically, as well as testimonies from medical professionals in the relevant fields of medicine related to the condition. In the case of VSS, due to its plethora of visual and non-visual symptoms, these fields were neurology, neuro-ophthalmology, ophthalmology, and optometry. As the CEO and Founder of the Visual Snow Initiative, a global nonprofit dedicated to VSS, I represented the patient’s perspective, highlighting my personal journey with VSS, how the medical community’s lack of acknowledgement, resources, and support have negatively impacted the VSS patient population, and why VSS deserves its own ICD. 

Then, our proposal is reviewed by an objective party in medicine and sciences, an expert in the fields of medicine relevant to the condition but does not work with the condition whatsoever. This expert thoroughly analyzes the proposal, references, research, as well as the supporting testimonies and documentation. Based on all submitted data and materials, the expert writes a review that is submitted to WHO’s Medical MSAC. This review contains their decision on whether they feel the condition should get its own ICD code. MSAC examines the proposal and the expert’s review. Based on these, they ultimately vote on whether the condition should get its own ICD code. If they approve the proposal, then their decision is then passed along to the CSAC, who designates a numerical code to the condition. At this point, the condition is granted an ICD code and is included in the latest edition of the International Classification of Diseases, which would be ICD-11 in this case.

Q: Should VSS be considered a disability?

Amongst the Visual Snow Syndrome (VSS) patient population, there are mixed feelings regarding whether the condition should be listed as a disability. For those whose VSS symptoms are severe and debilitating, VSS being considered a disability often is a concept that strongly resonates. Many people with VSS have expressed they are unable to work, drive, go to school, or function normally, and their quality of life is severely impacted. Despite their symptoms, many with milder cases of VSS have reported they are still able to see, drive, and work sufficiently to function daily; they have expressed concerns that with the label, “disability” may experience imposed limitations and even discrimination. 

As mentioned, not everyone’s case of VSS is the same. (For information and visual examples regarding why, please access the Understanding VSS page on the Visual Snow Initiative website. However, I personally still believe that people should have the option to choose whether they want to file for VSS as a disability and potentially receive accommodations. While some may not need it, others whose VSS is more severe may significantly benefit from it. With that in mind, the chances of VSS being approved as a disability without an ICD code for the condition are lower. This is one of the many reasons Dr. Peter Goadsby, Dr. Owen White, and I have worked together towards this possible milestone: Visual Snow Syndrome getting its own ICD code in the International Classification of Diseases. This way, people with VSS will have legal and scientific legitimacy for their condition from the World Health Organization and globally, as well as the option of filing for disability services with this support, which can significantly help their case.

Q: Are there any plans for future VSS classes or workshops in new locations?

Dr. Shidlofsky and Dr. Tsang have expressed that they hope to organize VSS Physician Masterclasses in more locations, such as the Philippines and on a potential reschedule for Toronto in 2024 and England in 2025. They hope to continue educating medical professionals globally to ensure widespread access to treatment options for VSS symptoms. In addition to the VSS Physician Masterclass, Dr. Shidlofsky has been actively organizing international workshops for opticians, ophthalmologists, neuro-optometrists, and vision therapists in locations, such as Guadalajara, Mexico, where he is spreading the word about VSS and offering insights into the NORT treatment protocol. He is also conducting introductory courses on the complexities of VSS, such as a one-hour workshop in the Dallas Fort Worth, Texas area and another for the University of Houston. Dr. Shidlofsky also has a speaking engagement in 2024 at the International College of Behavioral Optometry in Ottawa, Canada, where he intends to spread further awareness about VSS within the medical community. 

For further details regarding NORT and future masterclass plans, please access the following Visual Snow Initiative News & Research article by our Director of Research, Vanessa Mora, titled “Update On NORT Protocol: Progress From 2023 And Plans For 2024”.

Q 1: Is a virtual masterclass possible?

Q 2: How can I request a specific masterclass location?

Personally, I think a virtual masterclass is a fantastic idea. But if done, it needs to be done correctly, and there are also several factors to consider. When asked by our team about the possibility of virtual masterclasses, Dr. Shidlofsky and Dr. Tsang expressed that plans for virtual masterclasses may be a possibility in the future, but the idea is still under construction. 

Virtual education offers obvious benefits, such as global accessibility and flexibility. However, it may not supplement the quality of in-person learning. Medical regulations and practices vary by country, so if there are virtual masterclasses, just as is the case in-person, they may have to be tailored to suit permissible medical practices in different locations. 

In-person instruction allows learners to observe demonstrations of medical procedures and how to properly use the equipment involved in real-time. This provides a clearer understanding of the steps involved, proper technique, and nuances that may not be as apparent virtually. Moreover, the instructors can closely monitor the attendees’ performance during any simulations of the physician-patient experience. Immediate intervention is possible if any errors occur, and corrections can be made, which will maximize treatment effectiveness when the protocol is applied in-practice. In-person instruction also allows teaching methods to be tailored, and instructors can provide individualized guidance based on learners’ specific area of expertise related to VSS (neuro-optometry, optometry, ophthalmology, or neuro-ophthalmology), learning styles, as well as their familiarity with VSS and neuro-vision therapies.

While the interpersonal interaction and instructor feedback to ensure the proper usage of medical equipment for maximum treatment effectiveness are limited virtually, nonetheless, a virtual masterclass would make treatment methods more accessible globally. Despite the considerations above, I am still hopeful that a virtual masterclass can be achieved one day, with consideration to Dr. Shidlofsky and Dr. Tsang. 

Although the Visual Snow Initiative brought Dr. Shidlofsky and Dr. Tsang together to collaborate on Neuro-Optometric Rehabilitation Therapy for VSS patients, the masterclass was their concept. Because they are in private practice, we do not dictate the locations or dates of the masterclasses. You can email both physicians with your request for a future masterclass location. For more information on the VSS Physician Masterclass, you can also contact Dr. Shidlofsky’s assistant, Janice Nilsson / [email protected].

Q: Do you have any reading materials pamphlets on Visual Snow Syndrome I can use at my practice?

Yes, the entire Visual Snow Initiative website contains comprehensive information about VSS and resources that can benefit both patients and physicians. However, regarding your question, I believe our VSS Brochure would be an excellent addition to your practice. Our team has created an informational brochure, designed to provide valuable insights for medical professionals and individuals navigating the complexities of VSS. Available to download, print, and/or share, our brochure offers detailed explanations of VSS, covering all the (visual and non-visual) symptoms, diagnosis, causes, and current treatment options. It also contains a QR code, which can be scanned and will take you directly to our website for additional information about VSS and physician-patient resources.

Q: Why do some people seem unaffected by their VSS whereas others are debilitated?

Each case of Visual Snow Syndrome (VSS) can be different. Depending on the person, VSS symptoms may range from mild to moderate to debilitating. Everyone with VSS has visual snow, or constant static, present in their visual field (with their eyes open and closed); this is the hallmark symptom of the condition. However, the degree to which VSS impacts the individual is influenced by various factors, including which symptoms they experience (visual and/or non-visual), their intensity, the appearance of visual symptoms (which can vary in size, color, density, or speed, especially in the case of visual snow/static), and medical history. 

Another consideration if someone experienced VSS since birth or experienced the sudden onset of the condition later in life. People who grew up with VSS tend to be more accustomed with it. Researchers have reported their cases tend to be on the mild-moderate side. For those who experienced the sudden onset of VSS, like I did, understandably, they tend to be startled and have a difficult time coping. Researchers have also reported that for VSS patients who experienced the sudden onset of the condition, their cases present as more severe and debilitating. 

The medical community’s historic lack of resources and marginalization of VSS patients only made matters worse, often profoundly and negatively impacting their mental health. Personality can be an additional relevant factor; how an individual copes is personal to them and may vary. Views on health, medicine, and what the patient is comfortable with can also be unique to each person. 

All of these factors can vary from person to person, which accounts for case-by-case differences in VSS. 

People often form an idea of what VSS is like based on their personal experience with VSS. This is why some people with VSS may not understand why others with the condition feel oppositely to them when it comes to how it impacts their quality of life. Learning that having VSS is not the same for everyone and the factors that may contribute to this can help foster a greater understanding of the condition. It can also help people with VSS understand each other better. Knowing that not everyone may experience VSS the same way they do helps to explain the diverse array of responses regarding VSS. We discuss this further and provide photographic examples illustrating this concept on our Understanding VSS page.

Q 1: Do you think I should speak to my friends and family about having VSS? 

Q 2: Why do people get so confused when I try to describe it, and is there anything that can help?

Despite significant growth in acceptance, awareness, and education for VSS compared to years prior, especially within domains of neurology, neuro-ophthalmology, and neuro-optometry, generally-speaking, most people have still never heard of Visual Snow Syndrome (VSS). As with many marginalized medical conditions, oftentimes, if it happens to them or someone they know, only then does it appear on people’s radar, and become relevant. More conversation regarding VSS is being generated than ever before, with new people discovering what the condition is everyday thanks to advocacy, people sharing their stories, multimedia content/videos, and medical/scientific publications finally covering VSS. However, the fact remains that day-to-day, it is difficult to find someone with ample knowledge of VSS, especially with an understanding of your specific symptoms, some of which, like constant visual snow/static (with your eyes open and closed), are unique to this disorder. 

VSS is also a complex disorder, and this is one of the reasons VSS did not initially gain autonomy or legitimacy within the medical community. Originally, VSS research was very sparse, and it was more convenient for professionals to not study the disorder, which took time, money, and an understanding of complex brain networks, by simply labeling it as “migraine aura”, “HPPD”, or “unspecified visual disturbances”. If any test results came back “normal”, then some physicians made the offensive, harmful, and wrongful assumption that the problem must be “in the patient’s imagination”. It took years of advocacy efforts, funding, research, awareness, and education for the medical community to finally start accepting and scratching the surface of understanding VSS. If VSS seemed complex to many medical professionals, then naturally, it could be even more challenging to explain VSS outside of the medical profession. As outlined, explaining VSS to others can sometimes be difficult, as it is a complex and often misunderstood condition.  Although difficulties may still be present, having gone through the struggles of trying to explain my medical condition to others, my team and I developed resources that can help make the process a bit easier. 

It is beneficial to reach out to a family member, friend, or loved one you trust for support. The Visual Snow Initiative website and our social media channels can be helpful resources. There, we try our best to explain VSS in an understandable way. You may want to consider showing the information and other educational content we share, including photos of each VSS symptom and how it manifests differently for each person, videos, TikToks, and more. It can also be helpful to share personal stories from Visual Snow Warriors that resonate with you. 

Additionally, my team and I created the video, “What Is Visual Snow Syndrome?”, so people can use it as a helpful resource to easily explain VSS to others: 

Describing visual phenomena in general, especially the visual symptoms of VSS, which people may have not heard of before, can be difficult. I would recommend showing people photos or videos that accurately depict your symptoms, which can help them better understand and visualize what you are going through. These are available throughout our website and social media, as I mentioned. It also helps to remain considerate and patient throughout the process, especially if someone has never heard of VSS before. 

I also use familiar points of reference for people, both terms and visualizations. For example, someone may not be familiar with “visual snow”, so I compare it to trying to see through analog TV-static, a swarm of mosquitoes, heavy rain, or a dense snowstorm, which people are likely familiar with. Instead of “phosphenes”, I describe it as “constant strobe lights”. For “palinopsia”, I describe it as “when someone takes a photo of you while the flash is on, and it’s very bright, so you continue to see the flash in your vision even after the photo is taken”. These are just some examples which have been effective for me personally. Of course, you can use words and other points of reference which are most relevant and comfortable for you. I also kindly remind them that although the condition is called “Visual” Snow Syndrome and named after a unique visual symptom of the condition called “Visual Snow”, there are numerous other visual and non-visual symptoms as well.

Ironically, when it came to sharing my medical problems, I used to be very private. After how most people treated me when I was younger, I swore off opening up about my health struggles. However, it was not until I got VSS and started the Visual Snow Initiative that I realized how important it was to share my story. My desire to help others and find a solution for VSS helped me open up to conquer my fears. So many people with VSS have been marginalized or isolated and feel alone. I experienced that first-hand and know exactly how it feels. I shared my story to comfort others with understanding, advocacy, resources, and reassurance that they are not alone. I also did this to address the medical community and humanize this complex scientific condition, showing them the devastating, diverse, and global impact this condition can have, as well as that VSS can happen to virtually anyone. 

The world cannot become a more accepting, inclusive, and supportive space for people with VSS if we remain quiet. Your apprehension is completely understandable, especially so many people with VSS have been marginalized by the medical community. However, I would still encourage you to continue opening up about having VSS, using the information on our website, as well as photo and video references, to help those around you better understand what you are going through. That way, you can feel more supported while simultaneously helping others become educated about VSS. Several people in my personal life have learned they also have VSS after I introduced them to what it was; this led to them getting an explanation, diagnosis, and proper care for their condition. 

You cannot control how everyone reacts, and if they respond poorly, although it can be hurtful, please try to remember that this is not a reflection of you or your condition. You cannot force everyone to understand you, but many people will understand you and empathize with your situation. VSS can be challenging enough. In my opinion, the potential upside of having a support system and making the world a more informed place about VSS (especially after the condition has been historically marginalized) far outweighs the risk of being misunderstood. Seek support from others who can provide guidance, compassion, and encouragement along the way. Building a strong support network can make navigating VSS more manageable. People with VSS have been neglected and misunderstood for years, and we continue to persevere. Your condition is real, your feelings are valid, and you deserve to share what you are going through. If people in your immediate area are not supportive, please know that there are millions of people around the world with VSS. Please remember that you are not alone in this journey. 

Connecting with others who understand your struggles can be both comforting and informative. You can ask questions and learn from the community. Social media is an excellent way to connect, share experiences, and receive support from others who understand the condition. VSI is active on several social media platforms, including TikTok, Instagram, Facebook, Twitter, YouTube, and LinkedIn. Sharing your story, or being VSI’s Warrior of the Week, has the power to help and inspire others with VSS who can relate. Sharing your symptoms and experiences also contributes to the medical community’s understanding of VSS, leading to better outcomes in research and patient care. Despite initial reluctance, sharing personal experiences with VSS can foster empathy, raise awareness, and combat the isolation often experienced by those with the condition. By sharing experiences and engaging with others, individuals not only find solidarity but also contribute to advancing research and improving care for VSS. Ultimately, the journey toward greater understanding and acceptance of VSS is propelled by collective efforts to amplify voices and experiences within the community. 

Q 1: How can I contribute to research or raise awareness in an impactful way?

Q 2: Can I share my project or idea to help VSS patients with your team?

On our Get Involved/Ways to Help page, you can find information on several ways you can make a positive impact in VSS research and awareness. Thank you for your interest in helping our cause!

People also contact us regularly with their own inspiring ideas. If there are additional ways you would like to contribute to research and awareness (that are not mentioned on our Get Involved/Ways to Help page) or if you would like to share any resources or VSS-related projects, please let us know at [email protected] – our team is happy to help and will do our best to support your VSS initiative. You can also visit our Contact page.

Q 1: Are you and the other girl in the VSI videos sisters? 

Q 2: Do you both have Visual Snow Syndrome?

Q 3: What is the relation?

The woman who frequently appears on our social media channels is Vanessa Mora, VSI’s Director of Medical Research. Although we are not sisters, I am an only child and would have loved to have siblings like our VSI team members, such as Vanessa and Mehrad Mazaheri, our Director of Information Technology/IT. Vanessa is involved in VSS studies, writing articles, and raising awareness by creating content that showcases people with VSS and their struggles. She does this to give representation to the condition and help others feel less alone, as well as educate the public and medical community about VSS. Vanessa does not have VSS; she is a dedicated VSS researcher with expertise in Biochemistry and Human Physiology. I have had Visual Snow Syndrome, or VSS, since 2015 and share my journey through the Visual Snow Initiative.

Q: Hey Sierra. What are 3 random facts about you? Sorry if this is off-topic.

No need to apologize, it’s a fun and whimsical question! Each time I was asked this during “icebreakers” at university, I struggled to think of answers on the spot. Off the top of my head, probably that I’ve studied handwriting analysis, I love video games (action-adventure, fighting, racing, and RPGs.), and although this may be perceived as nerdy, I also genuinely enjoy learning, especially when it comes neuroscience/neuro-ophthalmology, animals (primarily marine life and birds), art/photography, and different cultures around the world.