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Episode 84: Sierra Domb - Visual Snow Syndrome
30 Plays10 days ago
When Sierra was diagnosed with Visual Snow Syndrome (VSS), little was known about this condition, and it was extremely difficult for her to get a diagnosis. By founding the Visual Snow Initiative, Sierra moved mountains to increase awareness and help bring recognition, research, and support to millions worldwide.
VSS is a neurological condition that affects how the brain processes visual and sensory information. Sierra describes the sudden and terrifying onset of her symptoms at 21, when her vision changed permanently in an instant. She speaks candidly about the relentless nature of her condition—constant visual disturbances, sensory overload, and insomnia—and how these symptoms disrupted every aspect of her life. Yet, beyond the physical impact, it is the emotional toll of being dismissed, misdiagnosed, and left without answers that stands out most.
What begins as a conversation about an often-overlooked condition quickly unfolds into a powerful story of resilience, medical trauma, and advocacy. Sierra’s journey reflects a broader issue within healthcare: the difficulty patients face when their condition doesn’t fit established frameworks.
Throughout the episode, Sierra offers a compassionate and honest perspective on living with chronic illness. She reminds us that resilience is often not a choice, but something we are forced to build, and that even small victories matter. Her story is both heartbreaking and inspiring, shining a light on the unseen struggles many people carry and the quiet strength it takes to keep going.
The song Sierra chose is Legend by Chronixx.
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Transcript
Introduction to Sierra Dom and Visual Snow Syndrome
00:00:00
Speaker
Hi, I'm Sylvain Bertolo and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Sierra Dom and we're going to talk about visual snow syndrome.
00:00:15
Speaker
Hi, Sierra. How are you doing? Hi, Sylvain. Thank you so much for having me. i really appreciate the opportunity to raise awareness. Well, appreciate you joining me. It's great to have you on the podcast. As you know, i love starting with a song. So which song did you choose and why?
00:00:33
Speaker
Right. I love that you have a little antidote too that's unrelated. i will say sometimes medical conditions can be like very defining to our identity. And some of us also have other interests, hobbies, things that we enjoy too. So I appreciate that you asked about music. It's it's refreshing. a song I really like is called Legend, and it's by an artist called Kronix.
Sierra's Favorite Song and Its Message
00:00:57
Speaker
He's a Jamaican reggae artist. He's one of my favorites.
00:01:01
Speaker
I love a lot of his work, but legend is special to me. because it shines a light on the world's hardworking, unsung heroes. It highlights people who strive to make a positive difference, you know, like whether in their local community or globally.
00:01:16
Speaker
But the key is it's even if their efforts go unnoticed, the core message of the song is basically if you help even just one person, that contribution still deeply matters.
00:01:27
Speaker
It's about substance over hype, rejecting superficiality to focus on true character and actions. I don't know how you feel personally, but I feel like in a world that often rewards negative news, greed, misinformation, and clout, Kronix is an artist that's basically reminding us that good people are still out there working day and night, even without millions of followers. or their names in headlines and and their impact is real. you know there's There's so much heartbreaking devastation, corruption, injustice, and chaos in the world. And again, i don't know I don't want to speak for anybody, but personally, I feel like a lot of us are feeling stressed, discouraged, sad, or burnout. And you know we're just trying our best to get through the day. Everyone's facing their own challenges in some form and things other people might not know about. so
00:02:15
Speaker
you know Maybe we feel like we as people or our efforts are never enough, but but legend is a song that conveys if you work hard, do acts of good for your community, you know whether that's for a loved one, a neighbor, an entire country, the world, or or you know maybe even yourself, you know and you advocate for what's right. Even if no one's watching, you can still make a positive impact.
00:02:36
Speaker
I love that you talked about unsung heroes because I feel like I talk to unsung heroes every single time I record an episode of the podcast. Yeah, thank you for bringing it up.
00:02:48
Speaker
So we're talking about visual snow syndrome. It's something that I discovered through you.
Understanding Visual Snow Syndrome
00:02:56
Speaker
And when I read a bit more about it, I was really shocked that I had never heard of it. So could you tell us to start with, how you discovered that you have visual snow syndrome and how it affects you.
00:03:12
Speaker
Yeah. So with visual snow syndrome, I'm not necessarily surprised you haven't heard of it. A lot of people have not heard of it. However, it may likely affect someone you know, whether it's a loved one or ah a colleague. It's actually a condition where its symptoms affect an estimated 2% to 3% of the global population across all ages. And the condition includes both visual and non-visual symptoms. Visual snow syndrome is a neurological disorder, and it can impact vision, sensory processing, and quality of life.
00:03:48
Speaker
Some people are born with VSS while others like me develop it later in life. And for those who are born with it, they may not even realize they have a neurological condition. They may think everyone sees the world this way.
00:04:01
Speaker
So those cases sometimes go unaccounted for maybe until they discover the condition through someone else or online. or But for people like me who know what life was like without VSS,
00:04:15
Speaker
pre-onset versus post-onset, the contrast is stark and and adjusting to life can be deeply challenging. And every case is different. So depending on the person's unique situation, they may have a mild, moderate or severe form that can interfere with daily functioning and quality of life. And, you know, for millions of people, it it it is debilitating.
00:04:36
Speaker
Well, let's start with how it impacts you and how you realized you have VSS. Sure, sure. I think to understand the impact of VSS, it's important because the condition has the word visual in it to make a firm note that even though it's called a visual snow syndrome, the condition entails both visual and non-visual symptoms. So that's something that I've had to go through and millions of others have as well.
00:05:09
Speaker
You know, common symptoms of VSS can include constant visual disturbances, intrusive distortions, flashing or strobing effects in the visual field. And you don't get relief when you close your eyes. It's there twenty four seven Pain-inducing light sensitivity, impaired night vision. Sensory hypersensitivity, which is also common for a lot of people who experience neurodivergence, as well derealization, tinnitus, insomnia, headaches, brain zaps, which are sort of these electrical so shock sensations um near your head and also abnormal skin sensations like burning, tingling, prickling or numbness, like think neuropathy, right? Along with many other visual and non-visual phenomena. So that's a lot of what I went through, um as I mentioned during onset.
00:05:59
Speaker
The main symptom, which every VSS patient experiences, and it's actually how the condition got its name, is called visual snow. So visual snow basically refers to seeing countless moving and flashing snow-like dots throughout the entire visual field, and they're often obstructive. And a lot of people compare it to seeing the world through a layer of old analog TV static.
00:06:23
Speaker
Do you remember those? Yes. so or Or in this case, a snowstorm, hence the name, right? So some people who don't have VSS, like maybe even you, for example, might experience visual snow temporarily under certain conditions, like in low light environments, or maybe if you're dehydrated.
Daily Life with Visual Snow Syndrome
00:06:40
Speaker
However, i would say a key indicator that someone may have the condition VSS is the constant nature the visual snow. So for individuals with VSS, the syndrome, this visual snow or static appears in both eyes 24 seven, whether they're open or closed.
00:07:01
Speaker
And this unceasing visual input can be like highly disturbing and taxing. ah affects both physical and mental well-being and creates ripple effects throughout the body. I went through all of this during onset So does it feel, because it's neurological, so I understand that it's, I imagine it's not that you're seeing something, but it's more a signal, but does it feel like you're seeing snow?
00:07:27
Speaker
Correct. Correct. So you're, you're super astute to even make that connection. So basically VSS is caused by brain network dysfunction, meaning multiple parts of the brain responsible for how we see and process sensations as well, ah they aren't functioning as they should. So when these networks in the brain misfire, you know, as in the case with VSS, it leads to a range of uncomfortable symptoms with vision, sensory processing, and daily functioning.
00:07:57
Speaker
To be clear, VSS is not a structural issue with the eyes themselves. It's about how the brain misprocesses visual and sensory information. i hope that answered your question. Yes. Yeah. Yeah.
00:08:09
Speaker
Does it bother you when it's time to get to sleep? Like, is it something that your brain interprets as information that it needs to digest in a way?
00:08:22
Speaker
That's a fantastic question. i think a lot of people with visual snow syndrome would agree that insomnia is a very persistent problem for them that they experience.
00:08:33
Speaker
I had a bit of insomnia just from my other medical conditions that I had. They might flare up at the end of the day before sleep. It made it difficult for me you know throughout my life. However, post-VSS onset, imagine you have light shows that are equivalent to that of like you know a concert For example, just strobing and and flickering going on in your vision, it's extremely distracting. It's creating like perceived stimulation like for you visually when you're trying to relax. A lot of people you know who struggle even With insomnia, the first thing they'll do is tell you, you know turn off the lights, make sure you have a great sleep environment, which is which is fine, but it's not always accessible or feasible when your brain is constantly forcing you to see visual stimuli all the time. You're getting visual disturbances and darkness, in fact,
Onset and Misdiagnosis of VSS
00:09:25
Speaker
for some people with visual snow makes it more pronounced. So these traditional methods of combating insomnia and relaxation, they're not always accessible
00:09:33
Speaker
or a good fit for people with visual snow syndrome. And like I said, for everybody, it's different. So it's important to find out what works for them. and And yes, insomnia has been a persistent problem for me. Actually, my case of visual snow syndrome is significantly better now, but insomnia is the one symptom that was always a bit more difficult.
00:09:54
Speaker
Yeah. If i understand correctly, you you were not born with Yeah. When it happens, it must be very scary. Could you tell us more how it started for you?
00:10:06
Speaker
Yeah, absolutely. you know, it it's funny. um It's not literally funny, but on yeah, just just speaking. I was very traumatized.
00:10:17
Speaker
I developed PTSD as a result of just the medical trauma I went through over the years. And I'll get more into the specifics of, you know, what sort of caused that PTSD and what I went through, but it used to scare me to talk about my medical conditions and talk about what happened to me um because all of those emotions, the fear, it would all come flooding back. And I don't want to feel that way again, if I'm being perfectly honest. I got enough pain going on from my other medical conditions. And even if I didn't, I don't think anyone wants to relive like the worst day of their life, figuratively speaking, right? But
00:10:54
Speaker
I have become a bit more desensitized over time. And I do think that within discomfort is room for growth, right? And I wasn't going to get any less scared of talking about it if it just became this sort of big built up thing over time. So again, like I'm grateful to people like you for pushing me to raise awareness and being willing to hear my story.
00:11:15
Speaker
I first experienced the onset of visual snow syndrome at 21 while I was a university student. So one morning I noticed like subtle flickering and flashes of light and and an unusual increase in floaters.
00:11:29
Speaker
I thought I might be dehydrated. And so I addressed that before leaving for class. But later that day when I was driving back to school from a food shop I had gone to, um my vision suddenly went completely black behind the wheel of the car.
00:11:44
Speaker
Oh, wow. Yeah. Instinctively, I don't know how, call it fight or flight. ah Instinctively, I pulled over to avoid a crash. And you know when my vision returned moments later, which felt like forever, but it was moments, when it did return, you know everything had changed.
00:12:00
Speaker
ah The way I saw the world literally and figuratively after the onset of VSS was never never the same. you know My entire visual field from that point on was overtaken by dense static, strobing lights. you know like we talked about constant visual disturbances the net and they never stopped.
00:12:16
Speaker
In the days that followed, I developed after images, double vision, pain. Whenever I looked at a light source, like even a lamp, constant ringing in my ears, debilitating headaches, sterilization, and extreme sensitivity to both visual and auditory stimuli. Like sights were that much brighter and sounds were that much louder, you know, along with other sensory disruptions.
00:12:39
Speaker
Naturally, I sought help. I spent years going from doctor to doctor, searching for answers, undergoing what felt like seemingly endless medical testing, and hoping someone would understand what was happening.
00:12:51
Speaker
And instead, I was repeatedly misdiagnosed, dismissed, and told my symptoms, quote, didn't exist or that I was too young to have anything seriously wrong.
00:13:02
Speaker
well You know, having already lived with two other medical conditions, autoimmune dysregulation and erythromyalgia, since childhood, I knew firsthand how real and life-altering health issues can be, like, regardless of age.
Challenges with the Medical System
00:13:15
Speaker
But my medical odyssey with VSS, like, revealed it. a very harsh and unsettling truth at 21 years old. That truth was that healthcare systems are often bureaucratic, cold, inhumane, with insufficient resources, limited ongoing and education, and and inefficient designs that that not only fail patients, but but medical professionals, you know many of whom are well-intended.
00:13:41
Speaker
Not everybody's bad. I know it can be difficult when you experience injustices within the medical system. but it showed me how much remains unknown in medicine yeah and how easily patients are overlooked when they're symptom their symptoms do not fit existing frameworks.
00:13:59
Speaker
and And that was deeply concerning, not just for those with VSS, rare or marginalized conditions or chronic illnesses, but for anyone, for every person, whether you're facing a well-understood health issue, a benign or transient concern, or or caring for somebody who is,
00:14:15
Speaker
you will inevitably be impacted by the gaps, limitations, and failures of the healthcare system. I agree. And naively, when I started this podcast, I thought I could solve some of this. But I think it's, ah as I'm sure you know, it's a bigger problem than people just listening to podcast. But at the same time, I empathize with healthcare professionals because you can't know everything.
00:14:44
Speaker
It's an endless task to get educated about all the conditions that are surrounding us. But I hear you. it must be tricky to be facing doctors who who don't know what you have and who cannot help you.
00:15:00
Speaker
As frustrating as it might be to be told there's nothing we can do to help, There is a degree of transparency that can at least be appreciated if they're just honest. It was just for for myself and a lot of people, I think. And it isn't even – don't want to attribute it solely to the medical community. I just think it is this sort of societal stereotype, if you will, that in medicine and sciences, professionals are all-knowing.
00:15:26
Speaker
right? And that isn't necessarily something that every professional is touting. It's something that sort of put put on them that expectation. And and initially, I won't lie. like I will speak very frankly. I value transparency.
00:15:39
Speaker
My condition had become debilitating. can no longer work or drive safely. I struggled with reading. I had to take a hiatus from school. Recognizing the faces of friends and family, or like even looking at a sky or a sunset was a disorienting nightmare.
00:15:54
Speaker
I was desperate. I sought help from countless specialists. Nearly every eye test came back normal, and you know my eyes were structurally healthy, which led many clinicians to dismiss my symptoms as imagined or psychosomatic. you know And one specialist acknowledged that my condition might be neurological, but offered no direction beyond telling me like,
00:16:15
Speaker
We'll just live with it. you know You're young. Try to move on with your life. And others unfamiliar with visual snow syndrome, they reacted with uncertainty and fear. ah The ones that were unfamiliar with visual snow syndrome were suggesting I might go blind.
00:16:29
Speaker
or face a life-threatening condition. But in that moment, they couldn't confirm that or refute it They were just sort of guess doing guesswork because they didn't want to tell me they didn't know. So they were unable to provide answers because my test results didn't show anything conclusive. But but that uncertainty and being left in this in between of, well, you might go blind, you might die, but we don't know. We're just guessing. it Layered on top of relentless symptoms was was terrifying. you know And and then and attempts to treat in attempts to treat my symptoms, I was also prescribed medications that not only worsen my condition, but they introduce new and harmful side effects. Yeah.
00:17:05
Speaker
I definitely think there's people who are well-intentioned out there. I think transparency and communication is really important. And even just going that little extra mile to do to do some research for your patient can go a long way. And just staying up to date, not what you learned in medical school, you know, maybe 40 years ago, but hey, what's what's going on now? Let's stay up to date with the latest body of research. Maybe there's a resource or or a validated condition now, you know, with scientific evidence that that is matching my
00:17:36
Speaker
my patient's symptom profile, I can explore that with them. I was very traumatized and and feeling fear, trying to cope with VSS and the all these experiences and feeling like I was, because I was led to believe this, the only person experiencing these symptoms at the time. And I was a medical anomaly. like I had lost so much in life and it did leave me feeling disillusioned with the medical system. And it isn't until I began my advocacy work, ironically, that I developed more empathy for the struggles and tedious amount of work that doctors and researchers and other you know medical personnel who are trying to help have to face and how the system isn't designed for them to even be able to to help patients. But of course, the patients are ones who are are suffering most of all.
00:18:28
Speaker
So just trying to cope with VSS and that's ultimately my visual snow journey. And then I got a diagnosis.
Diagnosis and Raising Awareness for VSS
00:18:35
Speaker
I did i did find ah ah a gem of a medical professional and and he became a friend. Yeah. And diagnosed me.
00:18:43
Speaker
Can you tell us more about that? How did you find the the right person for the diagnosis? Yeah, absolutely. Because unfortunately, despite what I had gone through, there really wasn't any answers given to me.
00:18:58
Speaker
I began searching for answers of my own, as many of us do. I came across a research paper online by a neuroscientist, doctor and professor called Peter Goatsby.
00:19:09
Speaker
describing what was visual snow syndrome. And it was a neurological condition with persistent visual static and related sensory symptoms. And it described exactly what I was going through. So I reached out to him and after his assessment, he formally diagnosed me with VSS.
00:19:27
Speaker
The diagnosis validated years of confusion and fear, but it also exposed like a much larger issue. you know Dr. Goldsby had told me that awareness, education, studies, and funding for what little research was being conducted for VSS at the time were all non-existent.
00:19:44
Speaker
And that I wasn't the only person going through this. He had seen patients all over the world various continents with visual snow syndrome, whether they were eight years old, 21 or 60.
00:19:55
Speaker
or or sixty And this was leaving millions of people of all ages suffering without hope. it And it became evident that VSS wasn't just my personal struggle. It was a global crisis of recognition and care or or lack thereof in this case.
00:20:11
Speaker
I guess finding out about that level of suffering was, it was devastating and and forced me to confront that reality that if nothing changed, people like me would continue to fall through the same cracks.
00:20:22
Speaker
So despite feeling unqualified and and overwhelmed, I made a decision. And if the system didn't have answers, i would just try my best and work to help create them.
00:20:34
Speaker
Are you referring to the Visual Snow Initiative? No, yeah. Did it come relatively shortly after your diagnosis, the will to start the initiative? Yeah, you know what? It did.
00:20:46
Speaker
From a from a a logical chronological standpoint, it did, but there there was a lot of thoughts before then, which was, you know, I'm struggling to adapt with this new medical condition on top of the two other medical conditions I already have.
00:21:01
Speaker
I was sort of reeling from the odyssey i had gone through, like medically with testing and all the trauma and of being told this is imagined and, or you might die. Like I was trying to wrap my head around everything. And, you know, for most of my life,
00:21:17
Speaker
again, because I had two other conditions since childhood, erythromalagia and autoimmune dysregulation, I really spent the majority of my life trying to hide my medical conditions um and just appear, quote unquote, normal. And by the way, the i i do personally feel the idea of normalcy and whatever that means to people. I do feel like normalcy is a sort of societal construct. We're all different and we have different neurochemistries, neurodiversity, and-
00:21:47
Speaker
you know There's so many things about us. So I think the sooner we embrace difference, the better. But at that age, I didn't feel that way. I was i was deeply ashamed when I was younger that my medical conditions were visible and they set me apart from peers.
00:22:03
Speaker
I tried opening up to some people about it even like educators throughout my life, like teachers, peers, and I wasn't met with the most supportive responses and and I was heavily bullied. So it really discouraged me from opening up about it. And I really just tried my best to hide everything I was going through.
00:22:25
Speaker
i tried to adapt to social life, continue my work in school, you know, activities where I could and and just try to hide it. I would miss school and I'd be at the hospital a lot. And it was really difficult to sort of have that double life as ah as a child and a teenager.
00:22:42
Speaker
oh and I had also, i had gotten cut Cushing syndrome as a byproduct of medication that was supposed to treat my conditions as well. So it was just, it was just so bad. But when I got to college, I was trying to sort of put all that behind me. And ironically,
00:22:58
Speaker
you know, while I was in college, that's when I got visual snow syndrome. So it was this cumulative snowball of medical trauma throughout my life, seeing how society was not supportive or understanding at large, or maybe accessible for people, right, who are going through those things, how it was stigmatized to even have those medical issues to talk about physical and mental health at that time when I was growing up. I'm I'm glad that they're having more open conversations now. This is so important. um
00:23:30
Speaker
I had always felt alone. And then once I found out from Dr. Goatsby that there was millions of people affected, that was what pushed me to found the Visual Snow Initiative.
Founding the Visual Snow Initiative
00:23:41
Speaker
So I got Visual Snow Syndrome in 2015. And in 2018, that's when I founded the Visual Snow Initiative to provide what I and and others you know had been missing. So like increased awareness, recognition, education resources, and research infrastructure. I didn't know I was going to do it. Again, and felt underqualified. i was just like, I'm just going to try my best. you know
00:24:03
Speaker
Amazing. Thank you If you don't mind, we'll come back to to the the initiative. But you just described what I can imagine millions of people go through, trying to hide condition, trying to fit when they don't fit.
00:24:22
Speaker
and feeling that their voice should be smaller not louder it sounds like you've been through a difficult journey but listening to you i assume that you're on the better side of that journey what would be your advice to someone who's struggling like you did how do they find their voice how do they speak up First and foremost, I want to be honest and tell you that I'm not on the other side of anything.
00:24:52
Speaker
I very much struggle daily with not just my health conditions, but also everything I've been through and it had to in the parts of life I've had to be exposed to because of them.
00:25:07
Speaker
And it's been hard to witness that. The injustices, the the cruelty, you know the fear, the isolation, And yeah, I had spent much of my adolescence like just trying to hide and and adapt and manage my health conditions with limited understanding and support.
00:25:24
Speaker
And when this new condition appeared, which was visual snow syndrome, you know I really felt like I couldn't handle anymore. And I think that in life, we can't demand resilience. It's more like life forces us to become resilient. Does that make sense? Yeah. yeah like We'll be put in these situations and also good situations too. Great things can happen in life. We'll have amazing things happen that we never thought possible and there will be atrocities in our life we never imagined either, right?
00:25:56
Speaker
But you keep going and you don't know how you're going to find a way, but somehow you will find a way. and I always stress the importance of self-care, i think it's very underrated.
00:26:09
Speaker
this yeah ah Again, it varies depending on culturally where you're from, but i I did grow up in a culture that strong work work ethic is very prioritized and showing off is is encouraged.
00:26:24
Speaker
And also giving this superficial image of appearing like everything's perfect and fine has become normalized. But That's not what I go through. It's not feasible for me. That's not the reality for the majority of the world. Everyone is going through something. And in a society where you're not really conditioned to make self-care a priority or or someone might perceive that as, oh, selfish or inconvenient. You need to take care of yourself. And that can even be, for example, if you're not feeling good and you're able to get out of bed that day, that in and of itself can be a victory. It doesn't always have to be something grand. do you know what I mean? So I think i think it's about being kind to yourself.
00:27:04
Speaker
you know Yes, be kind to others and and be kind to yourself too. And if there's something that really matters to you, you know whether whether it's a humanitarian cause or or something that you think will really make you happy in life, so long as it's safe and and ethical, find a way to make that work for you within the the framework of your life. And it's okay to dream big.
00:27:29
Speaker
Don't let those things deter you, but also don't force yourself to try to be someone you're not. It's you yourself as you are, are enough We don't get to choose or design.
00:27:40
Speaker
Truly, like when we're born, you don't design the way you look. right you don't You don't design how your your voice is going to sound. You don't design, oh yes, I want this health issue or I don't want that one. like You do the best with what you're given. and and that That is all you can do. Try to find happiness and advocate for the things that matter to you in ways that are accessible and meaningful to you. and and Try to surround yourself or reach out to people who might be able to help you get there.
00:28:05
Speaker
Yeah. So going back to the initiative, what was your goal when you started and where is it now? Right. So at 23, founded the Visual Snow Initiative and in 2018 at that time, you know, awareness and resources for the condition were very limited.
00:28:27
Speaker
There were significant gaps in research and funding and and just information about VSS in general. I was told that progress could take 30 to 50 years for medical professionals that I consulted ah if we were lucky. I'm like, oh, that doesn't sound very lucky. and and I truly knew nothing about timelines for these things. you know at At the time, I was a university student. I was studying communication and film. i I had done a voice acting and like had a radio show. that I was so out of my depth um in terms of understanding like
00:29:01
Speaker
clinical research timelines, the bureaucracy people have to go through. Like it's, it's crazy. When I created the Visual Snow Initiative, it wasn't only about advocacy and building resources and advancing research for a condition that was recognized. like Visual snow syndrome was not recognized at all within the medical community. It continues to remain a problem, right? But compared to where it was before, our first challenge was proving that VSS was real at all, you know a condition the medical community had refused to believe existed through collaboration with researchers,
00:29:35
Speaker
Advocacy efforts and raising awareness progress began to take shape and today visual snow syndrome the condition and visual snow the symptom.
Initiative Successes and Ongoing Needs
00:29:43
Speaker
They're both recognized by the World Health Organization and the International Classification of Diseases the 11th edition, which is the most recent edition. So now there's official ICD codes. And brain imaging studies have demonstrated objective neurological abnormalities in people with VSS. And this essentially cements the condition as legitimate from a clinical, scientific, and legal standpoint.
00:30:06
Speaker
And, you know, moreover, we had awareness and educational campaigns, resource development, advocacy efforts, and identification of viable treatment options that did not previously exist.
00:30:16
Speaker
um So this has all contributed to the advancement in VSS as researchers continue to learn more about the condition, its causes, and and explore additional interventions, both pharmacological and non-invasive. And they continue their long-term work towards the discovery of a potential cure.
00:30:32
Speaker
But i I do want to mention my team and i we did advocate for the first official ICD code for visual snow syndrome, but not every country uses ICD-11 yet. but for yeah you know But for those that do, the code provides a standardized diagnostic profile and description. And and this is like incredibly important for insurance purposes, research, medical and legal recognition of VSS, and epidemiological tracking. But you know as more countries adopt ICD-11 coding and modernize medical documentation, ICD-11 codes will become the gold standard for VSS. But there are alternatives in regions where ICD-10 is still used.
00:31:12
Speaker
So like, for example, we list them on the Visual Snow Initiative website. But these alternatives can be used to document VSS, though they might not fully capture the condition. And I just want to point that out.
00:31:23
Speaker
Yeah. I guess that's a massive achievement. I don't know how complicated it is to get the ICD code by imagining that it's not simple. Is that correct? Correct. I didn't know either. It is quite the opposite of simple and and it's lengthy as as all these things are. But you know what?
00:31:42
Speaker
I was doing a lot of that this for the first time actually before I founded the Visual Snow Initiative. The inception of our nonprofit and or organization was essentially something called the Visual Snow Conference. And that took place at UCSF in San Francisco. And it brought together researchers and patients globally, who some of whom like patients were meeting each other for the first time. They had never met someone else with VSS. Loved ones were there and patients got to hear the latest body of work from the handful of researchers that were were there at the time studying visual snow syndrome. And that was kind of what inspired me to start Visual Snow Initiative and and keep this going. and And from there, and from then on, I established a global research team and fostered collaborations across seven countries. you know I'm so thankful to our supporters. you know They were able to help secure funding for institutions.
00:32:35
Speaker
And also a lot of this work in the beginning was... self-funded too, and still is just by myself and impassioned individuals as well. So we had now we have research taking place at King's College London and places throughout the world, various institutions. And ultimately, that helped quadruple VSS research. And we produce advancements in biomarkers, pathophysiology, symptomatology, and identifying you know, different treatment approaches, still exploring.
00:33:07
Speaker
We developed the first official diagnostic criteria for VSS2, Global Physicians Directory, so that, you know, anyone in the world can hopefully find a physician that's closest to them. and And if not, then the directory is continuing to grow. So if anyone knows somebody who has helped them with their VSS, or if you're a doctor who helps VSS patients, please let Visual Snow Initiative know, because that could help someone else. um And we also developed...
00:33:33
Speaker
the first pediatric resources. That's called VSI for Kids. We have a multilingual website, educational materials. We have research collaborations going on through Johns Hopkins, Mayo Clinic, Monash University, different places. And we share a list of the progress. The Visual Snow Initiative team are incredible community and collaborators have made together in our website's timelines.
00:33:59
Speaker
I want to stress that despite these advances, millions of people are affected by VSS. Millions more don't know about it. And alarmingly, many healthcare providers still haven't heard of VSS, which puts patients at risk for misdiagnosis, marginalization, and mistreatment.
Managing Visual Snow Syndrome
00:34:15
Speaker
this lack of awareness worsens our symptoms and contributes to serious challenges with mental health that develop as a byproduct of all of this medical trauma, like with what I went through, including anxiety, depression, derealization, depersonalization, and and even increase increased suicide risk. So despite all the work we've done, it is important to stress that there needs to be continued support for visual snow syndrome.
00:34:42
Speaker
Yeah, I can imagine that your work is not over and if you still have a lot to do. It's amazing what you've achieved already. It's incredible. Oh, thank you so much.
00:34:54
Speaker
You said earlier that your symptoms are better now than the onset. Is it through medication at all? I do want to stress that treatment is not one size fits all for any condition, right? We all have different ah medical history and different considerations, preferences, and even access to treatments, if any. For example, there's no cure for visual snow syndrome. There are treatment options supported by research that can definitely help people and have helped people manage their symptoms. But again, for some of those people, it might not work at all either, right? So I want to stress that it
00:35:33
Speaker
there are things that have worked for me and things that have not worked for me personally. And and I don't endorse anything. I just want to provide information. That's what we do at Visual Snow Initiative so that people can read this information and with that access then decide what works best for them.
00:35:51
Speaker
Medication for myself personally, has not been helpful, but deeply harmful. it Not only did it not help my visual snow syndrome, but it made it worse. Or there was one side took as well where there was no change to my visual snow syndrome, but I would develop other symptoms on top of what I was going through, like narcolepsy and syncope, and that is very dangerous, or fainting, like things things like this.
00:36:18
Speaker
We have a list on our website of common medications that have been explored already in clinical research, or there there is some data available on our website as well as supplements.
00:36:31
Speaker
And they can access all of the information on the Visual Stone Initiative website as well and browse through that and and make a decision with their qualified medical professional who they trust and someone with knowledge of VSS, which is again, the whole purpose of the global physicians directory we created. It's really important that whoever's working with you has an understanding of both the brain and visual processing.
00:36:54
Speaker
Thank you. And we will put a link to the website on the On One Condition website as well. Oh, thank you. i do want to point out that visual snow syndrome patients face high rates of marginalization, misdiagnosis, and mistreatment.
00:37:14
Speaker
And this is largely due to the medical community's historic neglect of the condition. So even though the first US clinical records of visual snow date back to 1944, okay? Yeah. long so from nineteen forty four to recent times is a long time And within that window of time, the combination of severe symptoms, delayed recognition, the lack of education, understanding and support from healthcare providers has had devastating consequences. You know, often worsening the condition itself, aggravating co-occurring health issues, like leading to inappropriate treatments. And even in some cases, which we've heard from people through Visual Snow Initiative, false institutionalization.
00:38:03
Speaker
okay? And increasing physical and mental health risks. So this underscores both the widespread impact of ESS, but also the urgent need to support continued awareness, research, and resources. And yeah for Visual Snow Initiative, our long-term pursuit has always been supporting researchers towards the discovery of a cure.
00:38:26
Speaker
But people are suffering in the inter interim. And through scientific research and the collaborations we've forged, thankfully has been exploration and into methods that can help. And it's wonderful how, you you know this very well, how people can connect and share their experiences and what works for them and and help somebody else. And it's important that people don't have to suffer in the interim. So if there are you know avenues that are available and methods that are evidence-based and scientific or beneficial to the community in their own words, that they're able to to have access to that information and then you know decide what works for them.
Reflections and Advocacy for the Future
00:39:02
Speaker
But I'm happy to share my experience you know with research-backed strategies. But definitely, i want to clarify, i am not giving medical advice. The goal is just to offer some ideas on maybe um you know what worked for me. But you need to decide what's safe, realistic, and most effective for you, depending on your body, your circumstances, and definitely with guidance from a qualified healthcare professional that you that you trust. And ideally, someone with knowledge of VSS, like a neuro-ophthalmologist, a neurologist, neuro-optometrist, or neuro-vision therapist. And we have those, again, in the Visual Stone Initiative directory for anyone who's looking.
00:39:39
Speaker
And you mentioned medication earlier, right? Yeah. But like for example, I explored approaches like chiropractic adjustments and easing muscular tension. They didn't help me. In fact, they made my symptoms worse.
00:39:51
Speaker
Similarly, you know certain electrical stimulation techniques, acupuncture, you know restrictive diets, lifestyle measures. They weren't beneficial in my case, but they may help some people. And and scientists continue to investigate a wide range of approaches, including medications and non-invasive methods, and and their effectiveness can vary.
00:40:12
Speaker
Also, depending on how the technique is applied, sort of predicated on the provider's understanding of VSS, neuroscience, brain, vision, sensory coordination, and how the interventions are applied. So Personally, managing my VSS has has been a journey of blending science, lifestyle adjustments, and brain training.
00:40:30
Speaker
What I've found most helpful is to understand homeostasis. Homeostasis is essentially the body and brain's natural ability to like maintain balance and stability across its internal systems, even when faced with external or internal challenges. So this includes like body temperature, blood glucose, pH, and things like fluid balance. But the nervous system is also involved here. And this is important in the context of visual snow syndrome.
00:40:58
Speaker
So in neuroscience, this can include regulating neurotransmitter activity, neuronal excitability, communication between the brain and sensory organs,
00:41:08
Speaker
So employing strategies that maintain homeostasis means you're sort of keeping these systems in an optimal range so the brain can process information more efficiently. You know, the nervous system can remain calmer and the body functions a little bit more smoothly. So for someone with VSS like me supporting homeostasis is can help reduce the intensity of visual disturbances. It's essentially about like giving your brain and body the environment it needs to function at its best. um So it can adapt, compensate, and maintain stability like in the face of constant sensory like and visual quote unquote noise.
00:41:44
Speaker
First thing I did that helped me was removing caffeine and alcohol. It can affect neurotransmitter activity. And this isn't always realistic for everyone and want everyone to have fun or if they need a little boost throughout the day, it's okay. um But that has helped me keep my symptom severity at bay. And I also did something called neuro optometric rehabilitation therapy. It's abbreviated N-O-R-T or NORT.
00:42:11
Speaker
Essentially, NORT can help retrain the brain's visual pathways using eye exercises, saccadic training, prisms, and specialized lenses. And research actually suggests it can help improve contrast sensitivity, reduce visual distortions, enhance the brain's ability to process visual information. For me, it's made everyday tasks like reading, screen use, and driving way more comfortable. And these were things that Again, I felt debilitated while doing before and ultimately like had to stop and have been able to resume. I was able to go back to school and am now I got my degree and now obviously finished with that, but I'm able to function more comfortably daily.
00:42:50
Speaker
i also did something called mindfulness-based cognitive therapy or MBCT vision for VSS, specifically MBCT vision. It targets dysfunctional visual networks. So people hear mindfulness and their mind immediately goes to just like meditation or yoga retreats, which can be fantastic if that's your thing.
00:43:10
Speaker
But I'm a bit more ah focused on the science for myself personally. And in this case, you know, FMRI studies have shown it can potentially help improve neurotransmitter balance, promote neuroplasticity, and help the brain filter out visual noise, making the snow less intrusive. So like, it's not about meditation, at least for me, it's it's about neuroscientifically supported way to train the salience networks of the brain, attention and perception. to make my symptoms better. And also we've done studies through the Visual Snow Initiative that have shown a difference in the brain before and after MBCT vision. So it's like an objective and measurable source of data for me to refer to. as
00:43:57
Speaker
I've also used specialized tinted lenses and chromatic filters. I still use them. I've tried a wide variety of them to find the right ones that work for me. The ones that work for me best are in the blue-green sort of spectrum because they help reduce glare and they can soften harsh lighting and ease light sensitivity.
00:44:15
Speaker
Preliminary studies and patient reports suggest most people with VSS do get some symptom relief from it, whether it's a little bit or for some people it's a lot. But for me, they're essentially helpful in visually complex environments like busy supermarkets with all the lights and colors,
00:44:30
Speaker
I used to not be able to go to concerts, now I can. Offices with that harsh fluorescent lighting or and and sunny outdoor spaces too. And and on our website, we list the variety of filters and different color tints that are out there and kind of what they focus on. And they even actually have ah contact lenses in development for convenience if people want to try those when they're available.
00:44:54
Speaker
Again, that's not something we're creating, but something that other people are creating and we're just sharing information in case it might help people. um yeah And then I also try to manage sensory input.
00:45:05
Speaker
VSS comes with sensory hypersensitivity. So sunglasses, tinted lenses, earplugs, or or even simple strategies. like People talk about white noise machines.
00:45:16
Speaker
I love a good fan. It's cost-effective and it helps drown out tinnitus. It can make overstimulating environments more manageable. With VSS and a lot of medical conditions too, sleep quality can directly affect symptoms.
00:45:31
Speaker
So in the case of VSS, you know poor sleep can disrupt brain processes, like the brain and eye visual communication and worsen visual disturbances. I try to also prioritize a brain healthy diet, though my autoimmune consideration considerations may differ from other people. I have a lot of dietary restrictions.
00:45:51
Speaker
I have to. I wish I could eat all the yummy foods. I i can, unfortunately, sometimes. But people should do what works best for them, their unique sensitivities and Obviously, eating ideally and getting a ton of sleep is not practical for all of us. There's some days I can't sleep at all. There's days that I get two hours of sleep. Some days i'm you know I'm lucky if I can get five. But when I do have the time to dedicate to that, I make a concerted effort to sleep in, try to repair whatever has gone in through the day mentally and physically in my body through that sleep process. So my brain resets, it's refreshed, it's sharp, and the symptoms are less.
00:46:33
Speaker
And with that in mind, we were just talking about diet. I have used supplements like CoQ10, magnesium, and 5-HTP just to support overall brain function. um But I don't anymore. i now just focus on correcting deficiencies, like if I have any, right, like through blood tests. And I use a gentle multivitamin without stimulants. And I i do want to point this out because a lot of people don't know.
00:46:56
Speaker
Supplements are often unregulated and they can contain filler ingredients ah you might not want in your system. and And again, regulations sort of depend on your country and everything. So always research brands carefully, consult your healthcare provider, prioritize safety. And supplements should also like complement lifestyle and and treatment options, not really replace them, in my opinion, personally, again, up to you and your provider.
00:47:22
Speaker
Exercise, it's a tricky one because for some people it can make their symptoms worse and for some people can be helpful. Exercise is tricky for me personally because of my autoimmune dysregulation and erythromyalgia which can cause pain swelling weakness, and even syncope if I overwork myself. And my health issues require replenishing with a lot of electrolytes. so but But whenever possible, I engage like in low impact physical activities. you know I feel like
00:47:53
Speaker
I like to feel better after I work out, not worse or in too much pain. you know what You know how people say like, yeah, feel the burn, yeah right? But everyone's different. and if And if you're already feeling the burn or you're already feeling pain, maybe you don't want you know pain type of gain. Maybe you just want to be like, um I feel okay. So try to do whatever exercise works for you and is appropriate for your health, like walking, swimming, cycling. There are certain forms of exercise that have been shown to like help with brain-derived neurotropic factor. supporting neuroplasticity, improving mood and reducing stress, you know, then all of that can help your brain health and might help with visual disturbances. But again, it's unique to the person.
00:48:33
Speaker
And then over time, like, I've retrained my brain to redirect focus from visual static and towards, you know, more important stimuli. This is a neuroplastic approach, and it helps like reduce hypervigilance. and make symptoms feel less intrusive for me. And and over time, the brain can adapt, you know learning to filter out visual snow in daily life.
00:48:56
Speaker
Stress is a big trigger. I'm sure a lot of people on your podcast have mentioned that too, that life just face stress makes everything worse, whether you have a medical condition or not. And avoiding stress entirely isn't realistic.
00:49:08
Speaker
But you know I would encourage people to like set boundaries, practice self-care, get support from from loved ones and and communicate when you need help, you know, it can help regulate your nervous system just to be a little calmer, help maintain homeostasis, like, be kind to yourself, understand they're gonna be good days and bad days, progress isn't always linear.
00:49:31
Speaker
and And like engage in activities that bring you comfort and joy, celebrate big or small wins that can that can all help with the mindset. And you mentioned medications, just to come full circle, like I personally haven't found medications that help and some can cause significant side effects.
00:49:48
Speaker
That said, the idea of a targeted treatment can definitely benefit people. There isn't a one size fits all effective proven through research medication for visual snow syndrome. So yeah, I would say that's everything that I've done to help. I know that was a lot and I'm sorry, but at the same time, like I do think it's helpful for people to hear like, hey, there's some things that you can do that can make a substantial difference. My condition has improved.
00:50:17
Speaker
Dramatically. And I even have times where I've forgotten I have visual snow syndrome, which I described to you my onset, it was like 10 out of 10, 10 being the worst, you know, like to go from, from that debilitating, awful, agonizing place.
00:50:32
Speaker
where i I was immobilized essentially. And and to now where I've, as far as my VSS is concerned, functional is, you know, I'm i'm grateful. Yeah.
00:50:45
Speaker
But that's not the case for everybody. And that's why the work needs to continue. You mentioned, um you know, as as far as my work, i I wish it could continue forever, but I also...
00:50:57
Speaker
know that I'm not invincible and I'm facing health challenges that while I do the best I can to address them are ultimately beyond my control. I'm lucky that it's taken a long time. I found a really caring medical team.
00:51:10
Speaker
you know They've been helping me with my autoimmune issues and they've they've gotten worse in recent years. And so, you know i not to sound morbid, I don't necessarily know what tomorrow's going to look like. And what's going to happen to me in the future. But i'm really encouraged and inspired by the next generation of advocates.
00:51:33
Speaker
And I believe in them. And I'm i'm proud of what our our team, our community, and our collaborators have helped put into place and and hope we can continue to build upon it to advance progress for Visual Snow Syndrome.
00:51:50
Speaker
And that's what I wish as well. Thank you. Thank you very much. Thank you so much. I appreciate that. It's amazing. I mean, I hear you and you don't necessarily know what you're going to be able to achieve in the future, but you've already done amazingly. Oh, thank you. You too. You're incredible. thank i hope you're proud of yourself too. I am, I am. ah we started with talking about Unsung Heroes. And well, I feel like I've just met another one talking to you. So thank you so much. That's so kind. i feel really lucky to have met you and...
00:52:29
Speaker
and And a lot of people through my work, my God, we've, at Visual Snow Initiative, we've heard from people in roughly 93 countries at this point. and Wow.
00:52:40
Speaker
Yeah. And from from going to feeling like I was completely alone and being told you know no one would care, no one would believe me, and this condition wasn't real. And even at some points, Sylvain, to be honest, like you know being told like I should just end my life. There's no point. Like I, I'm really humbled and going back full circle, I guess, to the song. And like you said, on Unsung Heroes, there's so many people, like, I know the world is a cruel and unjust place, but there's good people out there too. And I'm really grateful that that they've supported me and and that I get to meet people, you know, like you.
00:53:20
Speaker
Me too. That's a perfect way to to finish this discussion. Thank you so much. And I wish you all the best.