Radical Health Rebel
Welcome to the Radical Health Rebel Podcast, where Leigh, a renowned Functional Medicine Practitioner, CHEK Practitioner, CHEK Faculty Instructor, Active Release Techniques® Therapist, Emotion Code Practitioner, author, and podcast host, takes you on a journey to achieve optimal health, wellness, and happiness. With his extensive training and years of clinical experience, Leigh provides a truly holistic approach to health that has proven effective even when other methods have failed.
Join us every week for insightful discussions and expert interviews focusing on chronic pain, gut health, and skin health. Leigh's diverse background and passion for holistic healing brings you valuable knowledge and practical tips from leading experts in the field. Whether you're struggling with persistent health issues or simply looking to enhance your well-being, the Radical Health Rebel Podcast is your go-to resource for achieving a vibrant and healthy life. Tune in and start your journey to radical health today!
Radical Health Rebel
124 - Eczema & Topical Steroid Withdrawal Are Preventable with Briana Banos
This week, I’m thrilled to bring you a powerful and eye-opening conversation with the amazing Briana Banos—a talented documentary maker and passionate advocate for TSW (Topical Steroid Withdrawal). We’re diving into the devastating impacts of this iatrogenic condition, caused by the overuse or overprescription of topical steroids, often given for atopic dermatitis, or eczema.
As someone who dealt with eczema myself in my early twenties—and briefly used topical steroids—I’m fortunate that I never suffered myself. In addition, I’ve had friends and family members struggle with eczema and even TSW. So, when I came across Briana’s first documentary, *Preventable*, on social media, I knew I had to learn more.
The documentary lays bare the seriousness of TSW and shines a light on a heartbreaking reality: many sufferers are gaslit by the very healthcare professionals who prescribed these treatments in the first place. Left without support, they’re forced to navigate lives filled with pain, frustration, and despair, often feeling like their condition isn’t taken seriously.
Since recording this episode, I’ve also watched Briana’s follow-up documentary, *Still Preventable*, which is equally—if not more—powerful than the original. Both films are deeply moving, and they expose a critical issue that’s been ignored by much of the medical community for far too long, despite clear evidence of its existence.
Briana’s relentless campaign to raise awareness and improve the lives of TSW sufferers is nothing short of inspiring. It was an honor to sit down with her and do my part to support this crucial movement.
This episode is a must-listen, so settle in and join us for an important conversation that could change how you see eczema, topical steroids, and the healthcare system itself.
We discussed:
0:00
Impact of Steroid Withdrawal
10:24
Challenges of Topical Steroid Withdrawal
18:58
Mental Toll of Skin Conditions
23:20
Holistic Healing for Eczema Relief
27:30
Long-Term Challenges of Steroid Withdrawal
44:20
Journey to Healing Eczema Relief
1:00:54
Medical Education and Health Costs
1:14:39
Advocating for Topical Steroid Withdrawal
1:21:17
Support and Advocacy in Health
You can find Briana @:
https://brianabanos.com/
Preventable: Protecting Our Largest Organ
Still Preventable: TSW Documentary
YouTube Channel
Instagram
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You can find Leigh @:
Leigh's website - https://www.bodychek.co.uk/
Leigh's books - https://www.bodychek.co.uk/books/
Eliminate Adult Acne Programme - https://eliminateadultacne.com/
Substack - https://substack.com/@radicalhealthrebel
YouTube Channel - https://www.youtube.com/@radicalhealthrebelpodcast
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it's so awful for your mental health because you're just trying to basically survive some days. So I think people don't understand the mental exhaustion and toll that it takes to just get up and be a part of the world.
Speaker 2:Welcome to the Radical Health Rebel podcast. I'm your host, lee Brandom. This work started for me several decades ago when I started to see the impact I could make on people, helping them to identify the root cause of their health problems that no doctor could figure out, including serious back, knee, shoulder and neck injuries, acne and eczema issues, severe gut health problems, even helping couples get pregnant after several IVF treatments had failed, and it really moves me to be able to help people in this way, and that is why I do what I do and why we have this show this week. I'm thrilled to bring you a powerful and eye-opening conversation with the amazing Brianna Banos, a talented documentary maker and passionate advocate for TSW, which stands for topical steroid withdrawal. We're diving into the devastating impacts of this iatrogenic condition caused by the overuse or overprescription of topical steroids, often given for atopic dermatitis or eczema.
Speaker 2:As someone who dealt with eczema myself in my early 20s and briefly used topical steroids, I'm fortunate that I never suffered myself. In addition, I've had friends and family members struggle with eczema and even TSW itself. So when I came across Brianna's first documentary Preventable on social media, I knew I had to learn more. The documentary lays bare the seriousness of TSW and shines a light on a heartbreaking reality that many sufferers are gaslit by the very healthcare professionals who prescribed these treatments in the first place. Left without support, they're forced to navigate lives filled with pain, frustration and despair, often feeling like their condition isn't taken seriously.
Speaker 2:Since recording this episode, I've also watched Brianna's follow-up documentary, still Preventable, which is equally, if not more powerful, than the original. Both films are deeply moving and they expose a critical issue that's been ignored by much of the medical community for far too long, despite clear evidence of its existence. Brianna's relentless campaign to raise awareness and improve the lives of TSW sufferers is nothing short of inspiring. It was an honour to sit down with her and to do my part to support this critical movement. This episode is a must listen, so settle in and join us for an important conversation that could change how you see eczema, topical steroids and the healthcare system itself. Brianna Banos, welcome to the Radical Health Rebel podcast. Thanks for coming on the show.
Speaker 1:Thank you for having me.
Speaker 2:It's great to have you here, brianna, and to kick things off, could you share a little bit about your experience growing up and particularly your experience that you had with eczema?
Speaker 1:So I mean growing up, I've had it ever since I was a little girl. I remember it being in the usual spots that you would think eczema would be with the, you know, inside of your arms, the back of your knees. I had like little spots on my neck. I remember people would be like do you have a hickey?
Speaker 2:And things like that.
Speaker 1:So people would always you know they had their little things. So it made you very self-conscious Thinking back. It was nothing compared to what I've been through this past decade, but yeah, I had it ever since I was a young girl. I had a dermatologist here and there, I believe, but I didn't use a lot of steroids. I did use over-the-counter hydrochloric zone, which is a steroid for it, but it was quite easy to manage. I just think back then you're going through puberty. Everything is huge to you and world ending. So to me it was horrible, but it really was so, so small.
Speaker 1:I have friends that still don't recall that I had eczema growing up. It just wasn't on their radar so it wasn't until becoming I was like early 20s when it really kind of went out of control, when I started working as a performer on a cruise ship and I just think the environment and the air and the costumes and the sweat, it really it just blew up. And that's kind of when my journey really started with having to deal with the severity of a skin issue. And yeah, that's when the heavy steroid use started. The protopic started. I was on a slew of medication. I think it was seven prescriptions at one time of antihistamines and antifungal and antibiotic the steroid, the protopic and I was just slathering stuff on and taking so many pills and when I would come off of them I would go back and I would flare worse. And it was just this merry-go-round of having to be married to these drugs in order for my skin to kind of be okay, and then I wouldn't be able to swim and I wouldn't, I'd be afraid to do certain things and it just wasn't my nature. I was very adventurous, I was very, you know, I wanted just to be able to go off and do whatever I wanted at a whim.
Speaker 1:And with eczema, a lot of things have to be put into your thought process of the day, especially when it's not great. So when people think, oh, it's just a skin condition, no, it affects everything From the moment you wake up. You wake up and you're like, okay, what spots are there? Where am I itchy? What clothes should I wear? Um, you know, cream is going to help today. Uh, if you're traveling somewhere, do I need to take something? Do I need to bring an extra pair of clothes in case I bleed on them? It's just if friends are going out late, should I be drinking, is that gonna make things worse? So it's. There's a lot of things that go into having a skin condition, and for me with eczema, there's there's just a list that you have to go through to get through the day yeah, yeah, you mentioned.
Speaker 2:You mentioned steroids. I just want to make it clear you're not talking about anabolic steroids, you're talking about corticosteroids, right? Just just so that people are aware, because obviously there is there is that confusion sometimes. I mean, you know when we were speaking, you know before we started recording, you know I mentioned to you that there is some level of history of eczema in my family. You know my sister, myself, so I didn't have it bad, but it was bad enough. I mean, I did use corticosteroid cream called Betnavate. I also used I don't remember what it was called, but I remember it was made from petroleum, it was like a jelly kind of stuff and it was like grease.
Speaker 1:Yeah, an emollient to keep the moisture locked in locked in.
Speaker 2:Yeah, you know you look like some kind of elephant man when you put that stuff on your face. Um, very shiny, and luckily for me, I only had it for a short period of time. But my sister did suffer much longer than me and you know I can remember quite often she'd be scratching and you, my dad, would always be getting annoyed with her. Stop scratching, you know, as if that's going to help. You know, and I used to explain it to him. I said, dad, it's like saying to heroin addicts don't take heroin, right? You know you shouldn't be doing it, but you can't help yourself. You just have to scratch, right?
Speaker 1:Well, I mean I can. Sometimes I even go the longer. I know this is maybe a funny way of looking at it, but it's kind of like if you're in the middle of having sex and someone says, all right, stop. And you're like, why? Like when I'm scratching, like we we talk about, like this bone deep itch, and it's just like I can't stop, Like it's just something I have to do, and so to tell someone to stop doing that, you're like, I can't like it, I need to scratch it.
Speaker 2:Yeah, it's pretty awful. I mean the other, the other thing that I remember as well, again as a young child. So there was a friend who lived really close to me as a young child. So there was a friend who lived really close to me. He was a year younger than me and from my earliest memories of knowing him, he had head to toe eczema and you know, he was just like one big scat, you know, and his mom, his poor mom, just didn't know what to do. Even even as a five-year-old I could tell his mum was struggling to know what to do with him and she'd do things like put boxing gloves on him at night so that he wouldn't scratch himself, but then you just get the laces, you scratch yourself with the laces of the gloves. You know, um, but you know, I saw him go through some horrible times, you know, like we'd be playing football and all of a sudden all his skin would just split open.
Speaker 2:You know, it's just awful yeah, it was pretty, pretty awful. But you know, it sounds to me like what it sounds to me it was a case of you know you were going through that and you know the people that you were going to for help didn't really know how to help you. They thought they were doing their best because they were trying to alleviate the symptoms, when really the only way to deal with anything like that is to find out what the root cause of the issue is and deal with it at that level.
Speaker 1:For anyone with eczema especially so. I have experienced topical steroid withdrawal, which is basically anyone. We don't know the prevalence of it, so I can't tell you who will go through that and who won't, but people that tend to be on chronic use of hydrocortisone or, like you, use bentivate. There's different potencies of steroids that people don't realize. Strengths and especially younger children. If you're using even just for a small amount of time, you could potentially what they call they're trying to move away from the word addiction or dependency, but we still don't understand the mechanism of how it's working in our body. But you go through this horrific withdrawal and we don't.
Speaker 1:There's people that are long haulers, like myself. Where it's, it just completely destroys your system. Like you said, you become this like scab. You have oozing and crusting and people lose their jobs and their relationships and, um, it's just this awful thing and then, like you said, the parent didn't know what to do. So it touches other people's lives as well. And if only, if only doctors can look at the whole, which I I can't. Also, you know just poopoo on doctors that, oh, they're horrible and they want us to suffer. It's just that's what they're taught. We're compartmentalized into. You know, small specialties and that's what they look at, but to really look at someone as a whole and figure out what's going on before you just start throwing you know. Throwing you know whatever you think might work at it. It just feels so much more helpful for people and I think a lot of people would have less suffering if we could just focus on getting to the root of a problem and getting it out from there, as opposed to putting paint on like a rusty car.
Speaker 2:You know, yeah absolutely, yeah, one thing I want to go back to.
Speaker 2:Actually, so, and again, I experienced this with and she doesn't mind me talking about this because I've spoken to her about it before, I've spoken about her on previous podcasts as well my niece suffered really badly with, you know, very, very severe eczema and, as you were alluding to, it creates so much stress around everything in your life, right, but then the the double-edged sword is that you know.
Speaker 2:One thing we know about stress is that it creates an imbalance of gut microbes and it also causes what's called a leaky gut, so things that are in the gut can escape into the bloodstream that shouldn't really which then can affect the skin, and now you've got a vicious cycle. And the other thing that's interesting is that cortisone or corticosteroids create a stress response. So, yeah, absolutely. So you know it's no surprise that there is this withdrawal, because you know we've got something called the hpa axis and the hypothalamus, pituitary, adrenal axis. Now, if you're providing your body with exogenous cortisone slash cortisol your, your hypothalamus and pituitary are like what the hell is going on now. So soon as you take that away from someone, of course, the body's going to be all over the place, right?
Speaker 1:yep I mean, basically, they allude to it as being that's why they call it dependency, or it's like our body's like well, if you're giving it to me externally, why am I going to make it, why am I going to produce this? So, taking it away? Your body's like what?
Speaker 2:yeah, yeah. And then then, you know, trying to get the body back into balance after all these feedback, feedback loops have been manipulated. You know I can imagine I mean I've. You know, I know I did. Luckily I didn't go through topical steroid withdrawal. I would imagine there was a degree of that in my niece's experience. I'm pretty sure that's the case. I know you said, when you were much, much younger, I guess you had eczema, but it sounds to me like the symptoms were quite well controlled. Would that be fair to say?
Speaker 1:Yeah, I don't ever recall it being unmanageable. It wasn't something that I was out of control of, nor my mother. I've interviewed so many people. I created a documentary back in 2019 called Preventable, and I got to interview so many people so many wonderful people about their tropical stair withdrawal experience.
Speaker 1:A survey, itsan, which is our organization, our nonprofit did a survey where I believe 90% of our camp of how you come into topical steroid withdrawal is from the eczema community, because so many of us use topical steroids as a way to mitigate our symptoms and, yeah, their stories did not compare to mine. They're talking about putting boxing gloves on to stop from someone scratching or wrapping them up in certain bandages, or having towels on their couches because they're so greased up and their parents don't want all the grease to ruin furniture. These are things that people have to live with and go through and manage that no everyday person would ever even think about. And these are children and teens and they're talking about all their stories and I'm like, wow, I never experienced anything like that with my eczema growing up, but there are.
Speaker 2:There are some horror stories of just being to manage their skin yeah, yeah, and again, we kind of touched on this before we started recording. But you know, for some people with severe eczema or topical steroid withdrawal, it massively affects their mental health to the degree where they're considering suicide.
Speaker 1:Yeah, so sadly there's someone in our group that a lot of people knew and it was very, very sad that committed suicide. I don't want to give the family or anything away, but it was about two years ago now. Yeah, about two years ago, and I mean that's just a known one. But the mental aspect just because I had stress can cause such an imbalance in your body and having to constantly deal with chronic pain and a chronic issue. I was just reading I don't know if you know who Matthew Hussey is, but I was reading a book that he just recently wrote and published and he was talking about dealing with tinnitus.
Speaker 1:I actually have tinnitus as well and he was saying just dealing with that and dealing with hope and you would try all these different things and hope that it will help. And so you get yourself all like jazzed up and then you do this thing and it could be the strangest thing in the world, but you're desperate and you'll try anything to help the pain go away and then it doesn't work and you feel really disappointed and just that like boxing match of having to get back in the ring and try all of these things changing your diet, what diet do you do? What tests do you pay for? What nutritionist do you go to? What mental therapy do you end up trying to do while you're doing all these things? Because it's driving you crazy and it affects the way you feel about yourself, your self-confidence. As a single woman, I know what that feels like to just put yourself out there and go on a date and then you're feeling okay and then the next day you have a massive flare.
Speaker 1:That actually happened to me this past year and it's just like what do you do? And then you have to sit there and try and tell this person well, I have this skin condition and it's now. You can't touch me and now you can't kiss me and it's so awful for your mental health because you're just trying to basically survive some days.
Speaker 1:So I think people don't understand the mental exhaustion and toll that it takes to just get up and be a part of the world and then have someone maybe not intentionally, not out of any kind of malicious intent behind it but people love to comment on skin and I have had days where I will stare in the mirror for an hour and pick up myself and put this on and that on and just hype myself up. Right, I'm going out into the world. And then have someone in the house look at me and go, you are so brave, as if, okay, that was just kind of a backhanded way to say, wow, you look really awful, but go you for going out into the world. What am I supposed to do?
Speaker 1:am I some like villain that just gonna hide away in their cave like it's awful. I really wish there would be a normalization of people have skin conditions and it's okay, because going on the world is scary when you have that and just those little comments make you think, all right, the entire world now when I go out is just staring at me because I look a certain way. So that's just the ball that we have to deal with of the mental aspects that go in with having a skin condition.
Speaker 2:Yeah, yeah, absolutely, and I know that only too well myself and again I've seen it close hand other family members as well. I want to go back to something and we might come back to talk about mental health again, but I just want to go back to something because this is a really important point. So you know, you went through your childhood where you had eczema but you controlled the symptoms, so it didn't really kind of affect you too much as a child. Now that, I think, to most people would sound like a positive thing right, and in one way it is. But this is where I really try and help educate people really try and help educate people is that when you suppress symptoms, what you're really doing is you're kicking the can down the road, you're kind of asking for trouble. And you know what I say to people is when you have a symptom and it doesn't matter what the symptom is it could be eczema, it could be acne, it could be psoriasis, it could be bloating and gas, it could be lower back pain, whatever it might be it's your subconscious mind saying to your conscious mind there's an issue and it needs to be addressed and, as we alluded to earlier, it needs to be addressed at the root cause level. So if we go down that route of oh, let's, let's suppress the symptoms and it generally is the easier choice, right, so it's easier to implement. It doesn't take all the investigative work of finding out what the root cause of the issue is. But I guess my message is it's a dangerous game to play because, like you experienced, you know, you got into your 20s and all of a sudden it blew up. Right, correct, whereas sorry. I'll just say one more thing if when you first started getting eczema, you were able to go to someone who could help you find the root cause, you could have dealt with it right there and then, and then, when you got to your twenties, it would never have arisen because you'd already dealt with the root cause. I'd like to introduce you to Jill.
Speaker 2:Jill was a holistic lifestyle coach and Pilates instructor who had been struggling with eczema for her entire life. Despite following a healthy diet and lifestyle, her eczema had spread all over her body, leaving her frustrated and self-conscious. After thorough testing, we discovered that Jill had a parasite infection, leaky gut syndrome and toxic overload. With a customised diet plan and a protocol to heal her gut and balance her gut microbiome, jill started to see incredible results. In just a short amount of time, jill's skin cleared up and she experienced a newfound sense of confidence and self-esteem. Thanks to the support she received, jill was more able to socialize, feel more confident in her work and, ultimately, live a happier and healthier life. If you're struggling with eczema, don't wait any longer. Seek the help that you need and start living your best life today. Contact me today and see how I can help you on your journey to great skin, because everyone deserves to feel their best, just like Jill. If you'd like to transform your skin like Jill did, request a consultation with me at wwwbodycheckcouk. Forward slash consultation. Now back to the podcast.
Speaker 1:Well, I will say it's a slightly separate experience. So when I say manage the symptoms, I wasn't really using anything to suppress it when I was younger. It was manageable with lotions. It wasn't something that needed investigation. I would say back then needed investigation. I would say back then, when I hit my 20s, what I think had happened. If someone had investigated, it would have helped eradicate the circus that ensued after, which was because I had sensitive skin, which never really bothered me much. I wasn't on any kind of extreme medications or anything like that. When I joined and worked on a cruise ship, I believe I caught a fungal infection, yeah, and instead of looking into that and just helping with that and possibly, you know, going on a better diet for being on the ship, because the food isn't like wonderful that we're- fed.
Speaker 1:And it certainly wasn't food that I was used to eating every day. I think things would have been very different if my skin had just been swabbed or looked at and said hey, all right, we need to give you X, y, z, let's kick this out and let's get you on a better regimen and you're good to go. As opposed to the derm that I went to saw that I was in pain Again. I don't think there was any malintent. I think she was doing what she thought was best and just looked at me and wanted to console me I know exactly what you need and just gave me the kitchens, everything in the kitchen sink, because I think she was just firing at every possible thing that could be wrong. And I was just on that. And that's where the danger is, because I was just being thrown medication as opposed to okay, what, what was really going on? Why did my skin blow up so badly and then it just kind of went off from there.
Speaker 2:Yeah, yeah, so that's your kind of history. But I mean, how are you? How are you now? Where would you say you're at right now in terms of your eczema and the topical steroid withdrawal like you mentioned? You still occasionally get flare-ups yeah.
Speaker 1:So a lot of people especially I'm, I guess, what we call like a veteran or a long hauler in the tsw community. Um, january 25th will be 10 years coming up, so it's so hard to say. People like is it eczema still? Do you think there's still withdrawal symptoms? I, I wouldn't be able to tell you if it's either. Or I do believe something is off from my system, because I never had eczema as bad as I do now since using right the steroid. Yeah, and Protopic. I know there's not too much research on that as well, but Protopic is an immunosuppressive cream and I mean I've done even genetic testing and it says I have a genetic disposition that I shouldn't be using something like that. And, of course, no doctor's ever really taken me too seriously. When I bring that up they're like oh, um, okay. But yeah, I, I still get pretty bad flares, especially just like this past month. It was oh, two months ago now, almost like time flies. But I I went on a date. I even have a picture of myself where I still get my arms are not great and I still have stuff on my neck, but I was doing pretty well. I had just seen a roommate that day. I have a picture with her. I looked pretty nice.
Speaker 1:I even had my arms out that day, went on a date that night and then the next morning I just woke up with my neck kind of flary. My eyes were suddenly kind of hurting. I was like what's going on? By the end of the day I had swollen eyes, my neck was covered, my arms were starting to go, my hands. I was like what is happening? And I thought am I allergic to the person? But I don't think it was that. It was just like my body decided all right, we're having a flare.
Speaker 1:And it lasted for a month and it was very severe. I had swollen eyes. I was fighting with my doctor to try and figure out what is happening. I needed some sort of relief. I couldn't work. It was debilitating. It burned. I didn't want to stare at the computer and I needed to edit film and with swollen eyes that's really difficult. Super itchy. I had oozing spots.
Speaker 1:So I still very much go through the up and down, even right now you can. You can't really see it on the screen, but I I personally didn't put any makeup or anything on my neck because I have spots here. My mouth still, so gets it, my arms still get it, my hands still have it. I know it's really hard to see in this camera, but I'm like flaking off in my arms right now my hands, I still very much deal with it. And topical steroids are off the table. Immunosuppressant creams are off the table. Can't use those and I've been really trying. I just did like a gut test. We're waiting for the results. So it's still an uphill battle of trying to figure out what is best for me in this moment to do about my skin.
Speaker 2:Yeah, I'm guessing, would I be right in saying that you're much better than you have been in the past?
Speaker 1:Well, with anything with TSW, the beginning is usually the worst. My hair fell out, I was bald. I was a tomato from head to toe. I was just oozing everywhere. I had insomnia. I had swollen lymph nodes. My blood pressure was low at one point. My hormones were everywhere. I remember my estrogen was just all over. You seem allergic to everything. Your IgE is usually through the roof on any of your bloods. Then you have gender dysphoria.
Speaker 1:I just didn't feel like a girl. I couldn't wear makeup. I couldn't do anything nice with my hair. I couldn't wear nice clothing. I mean, that stuff was really difficult. I, when I and that was in 2015, 2016, 2017 was when it was the worst. But in 2021, I have had hip dysplasia in my left hip and I'd had a torn labrum. My doctor was like we've got to do massive hip surgery to put your hip back into a place that's better, so you don't keep tearing your labrum. Those surgeries took my body back into what felt like the beginning of TSW. I started losing bits of hair of TSW. I started losing bits of hair. My face was so flared, my arms were so flared. I couldn't walk because my hip was broken.
Speaker 1:It was awful and getting hit, I think, anyone with a chronic condition, and maybe you would agree it's actually the mental toll that starts to really hit down the line of you're just like I'm exhausted, I'm so tired and I don't know what to do anymore, and you just start spiraling. And so I remember that was probably the lowest mental point, because at the beginning you have this hope, people are telling you it's going to get better, and you have all this support. And when you just keep getting hit after hit after hit, less people are there immediately for that because they're like it almost becomes sadly.
Speaker 1:You're normal, that's what people think like oh she can deal with that and it just becomes a really lonely place of how much more can I take? It's just someone shoving your head in the water and pulling you back up and shoving you in the water and pulling you back up. There's only so much someone can take of that. It's torture and I think a lot of us I know I do and I'm trying to work on it I have that fear in the back of my head. I just never know when I'm going to be there again. Am I going to eat something tonight? That's going to do it. Am I going to touch something? Am I going to interact with someone or something? So that fear is always nagging in the back of your mind of be careful what you do and you just become a smaller version of yourself because it's like you see these landmines that might be there, and so you're just tiptoeing around and you don't know if your foot is going to land on one.
Speaker 2:Yeah, anxiety that you're experiencing of what might happen creates more stress, which makes you more likely to flare, and then you're back on that merry-go-round again which, yeah, I mean again you know I say I've seen it close up it's it's not, it's not pleasant. So so in your early 20s you started getting eczema, was it? Was it pretty soon after you were kind of, you know, after it got worse, that you were put straight onto the steroids?
Speaker 1:It was a couple months Cause I remember it was starting to get bad and because I was living on a cruise ship, it's really hard for me to get a Durham appointment and our ship went into a dry dock, which means we were able to sign off because the ship was having maintenance stuff done. And that was probably about three months into it, I believe, of me having the really big issues, so not too long after, but it was probably about three-ish months before I was able to see someone about it.
Speaker 2:Yeah, yeah. And what was the results of using that? Did it kind of calm down the eczema to a degree? Hey there, rebels, I have got something very special to share with you today. Did you know that every month, I release an exclusive no Punches Pulled episode? These are conversations you won't hear anywhere else, with incredible, sometimes controversial, guests who expose hidden truths, challenge corruption and bring you to actionable steps to take charge of your health.
Speaker 2:In a world where censorship and restrictions are on the rise, these subscriber-only episodes go deep and, for the price of a single takeaway coffee each month, you can become a paid subscriber to access this extra content, the kind of content certain authorities would rather you didn't hear. By subscribing, you're not just supporting the Radical Health Rebel podcast. You're helping bring even bolder, more controversial and inspiring guests onto the show. You'll also be making an investment in real health, real truth and real solutions, so much more meaningful than what you get with TV licenses, cable subscriptions or film streaming giants. If you're ready to support this movement for health and truth, head to the show notes and click support the show. It takes just a moment, so why not do it right now? Then come back and enjoy the rest of this episode. Thank you for listening, subscribing and for rebelling with us against the mainstream. Let's create a healthier, happier and fairer world together. Go to the show notes, click, support the show and let's keep the radical health rebel movement growing strong oh yeah, I mean I was.
Speaker 1:I was on two different antihistamines protopic uh, a topical steroid, an antifungal oral and an antibiotic oral, like you best believe, like it was just kicking everything in my system and, of course, if you've ever used a topical steroid, it's sort of like magic. It takes it all away so quickly and so, even within I think a week, maybe two weeks, of being on all of that, I look like it helped so much. I'd had remember my dance captain said oh, you have your cheetah spots, because I was having hyper pigmentation from where all the spots were, which is why I feel it was fungal, cause it was very, it looked fungal. And so I had these hyper pigmentation spots which I didn't care about at all. I was like I feel great, I'm not itchy, I'm able to sleep, I don't have patches all over me now. So to me it was like happy as a clam with all that, even if I had to take all that stuff.
Speaker 2:Yeah, yeah, all that, even if I had to take all that stuff. Yeah, yeah. And how long? How long did that? Let's call it honeymoon period last yeah.
Speaker 1:I had to go on that concoction a few times so I would use those things. I left the cruise ship, had my vacation kind of got off of it, skin was still not great, and then I would go back onto the cruise ship, that environment again with the sweaty costumes and things start flaring again, go back on all of that stuff. But then I started having skin issues in areas that I didn't before and that's kind of like where I think the real danger starts, because one of the the symptoms of topical steroid withdrawals you start getting eczema in other spots that you didn't before. But back then I don't know anything about this. So mom was concocting and I leave the cruise ship again and then I'm having to use it even after the cruise ship.
Speaker 1:And then I went back on my last contract before I got really ill and they put me on ciclosporin, which is an oral immunosuppressant you have to have bloods done for and things like that, and at that time living on a cruise ship trying to get your bloods done and everything wasn't a very easy thing. And then it was killing my kidneys. So now I'm I'm killing my kidneys for a skin issue and I remember I could not feeling great about it. I didn't see that it was helping very much, but it became like my normal to not have great skin anymore and I'm still on these drugs. I think the longest stint I did of an antibiotic oral was six months, which is nuts to me. That's a long time to be an antibiotic and yeah, so that was probably on and off for three years. All of that concoction of coming off of it. But your skin's not great. It needs to go back on. And by the time I came off of it was after my wedding in September of 2014.
Speaker 1:I remember my mother just being like maybe you just need a break from all this stuff because, my son was just not happy and I think she thought maybe a reset for me, and I kind of agreed. I was like, yeah, let's get off on this stuff. And as soon as I tried to get off of it it was just like a bloom of red rash all over my back, near my pelvic area, around my wrist, and then my eyes would start swelling and we just didn't know what was happening. And at first we thought I was know what was happening and at first we thought I was allergic to something maybe. And I did the deep dive and, you know, went to Google, which is a big no-no in the medical world, google, what is Google?
Speaker 1:And I remember going to my GP and she was like, oh my gosh, you know, let's get this. I'd had her since I was a little girl, you know. She just wanted to see me feel better, gave me a steroid shot and then put me on oral steroids for a taper. That helps so much. But then, as soon as I started to taper off of that, blew up again. And that's when I found someone online with topical steroid withdrawal what they called Redskin Syndrome and I was like I look just like her. She has all these symptoms that I'm having.
Speaker 1:And back then in 2014, it was so unknown and trying to bring it up to a doctor Cause I went back to the emergency room with our urgent care back in the States like A&E, and the guy was just like I don't know what this is, I don't think that's your problem. So he gave me another oral pack of steroids and he's like take it, don't take it, it's up to you. And I remember telling myself my ex-husband back then we were about to move and I remember expressing to him I'm going to take this steroid pack so that we can move. I said, but if I have these symptoms come back again. I'm not touching a steroid Like I believe. This is my issue and that's what happened. It was January 25th of 2015. I got off of that steroid taper and I didn't touch a steroid again.
Speaker 2:And my body just blew up. Yeah, so what did you do next?
Speaker 1:Yeah. So what did you do next? For the first I think it was even two months I was feeling hopeful that, whatever research I pulled off the internet, I tried to get any sort of resources off of them, off of what I found online. And I went to a derm up where I had moved and that was my old university town and there was a teaching hospital. There's something okay, fresh people, they're going to be curious. Not the case. There's something okay, fresh people, they're gonna be curious. Not the case. They barely wrote down my history correctly and then just told me, oh, you're gonna need probably another steroid shot or some sort of immunosuppressant and things like that.
Speaker 1:And I was like no one's listening to me. I mean, my hair was falling out. I was like, oh, it's just severe eczema. I was like, oh, it's just severe eczema. And I was like what are you talking about? And I just became gosh, really downtrodden and I was like I can't even go to the people that I thought I should be able to go to for support. And so I just kind of leaned into what small community there was back then in a Facebook group and just kind of went off of okay, guys, what are you doing? I was using napkins to help with my oozing and they're like no girl, let's get you some bandages, let's get you some Visco paste, some zinc, and I was just using bandages soaking in Epsom salt baths back then, dead Sea salt baths, apple cider vinegar baths, bleach baths, just anything. All sorts of different oils, coconut oh God, the coconut oil and just trying to survive off of the help of other people. And I'm definitely not someone who will sit on a couch and just boohoo myself.
Speaker 1:At first I was, and thank goodness I got out of that quickly Because I was like this cannot be my life, this is not happening. And that's when I began also advocating and I feel like that was a form of control for myself and to hopefully help other people. I had started a YouTube channel. I was trying to educate as much as I could myself and others, and that's when the whole idea of doing a documentary kind of came around so that I could interview other people and doctors. I really wanted to be able to tread that line of okay, who is out there helping us, who is trying to research this, who has a sympathetic, compassionate ear, who is still curious. A lot of older doctors just were really steadfast in their thinking, which is crazy to me because science is ever-changing and, yeah, I kind of just wanted to find the answers or be a part of the solution.
Speaker 1:So I did what I could with the community. I listened to them to try and see what helped their skin, what didn't. That was the support that I got back then Because really in the Um cause, really in the pharmaceutical world or like the Western doctor world, there really wasn't anything other than topical steroids and then some immunosuppressants that they could give you back then. And dupilumab was really new, which is a biologic drug that a lot of um atopic dermatitis people and some other skin conditions can take to help with the symptoms. But back then I was very wary of it. It was extremely new. The trials were just being concluded and I hadn't really gone down the route of seeing a naturopath or anything like that. I had tried paleo, I tried clearing out my own diet. It really wasn't helping very much. I had cut out caffeine, I cut out alcohol for a long time and I was just doing the best that I could with what I had at that time.
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Speaker 1:Yeah. So again with the kind of going in the ring and getting knocked out and then going back to the ring, I've tried a bunch of different things and I'm still trying to lean into it because I still don't want to just quote, unquote, give up and throw a white flag and just be like whatever. I have seen two different, like I guess you would call it. One was a I'm trying to get the right titles, but it was just two different naturopaths, and I've also done Chinese therapy. I did that for a bit, Very expensive, which is why I just couldn't keep going. I did it for about five months and I just wasn't seeing any results from it at all, to just be like okay, Bree, clear out your bank account, Keep going. I've done stem cell therapy. Oh my gosh. What else have I done? Just different pills and diets.
Speaker 1:I did try medical medium for a little while, Did like the celery juice in the morning and everything, and I will say I think that helped. But keeping that up, I became very, almost antisocial because I was making everything and doing everything, because it's like raw foods and if I cooked anything I wanted to make sure it was completely clear ingredients, and so sometimes I would spend almost my entire Sunday meal prepping, so I wasn't really doing much socially. But I will say there is something with the gut, which is why I just did another gut test, Like I want to make sure that when I'm working with a nutritionist, that I'm doing what's right and not just guessing. So yeah, I've gone down different routes. I even tried was it bicarbonate soda, Like you take it to try and help with your gut? And I don't know. Man. I've tried a lot of things over the decade to see what can be done. I've tried dupilumab. I even tried that. That's not natural, but I tried that as well and that actually really helped and.
Speaker 1:I was trying to work on my gut stuff while I was using that but then I had the awful symptoms that came a year later with the eye issues and stuff, and it was just too bad I had to withdraw from the drug.
Speaker 2:Yeah, yeah, yeah, I mean your journey doesn't sound too dissimilar from my niece's actually, um, and she, you know, I helped her to a degree but you know, as a family member I wasn't the right person to help her and she saw other people and I did really help her. Now, what, what? I would say what I've seen in my experience. So I've been in practice 28 years and it doesn't cease to amaze me what miracles I see happening. People from you know the worst situation to you know, getting back to what you would probably consider optimal health, and it's sometimes it can actually be getting the basics right now.
Speaker 2:I don't mean to like disrespect anyone by saying that, but like, if you, if you took someone and put them as part of a hunter-gatherer tribe living in nature as humans were intended to live, I think most people's illnesses would just go away. Yeah, I agree with that one. So it is very you know. I guess my message is for anyone suffering from eczema, tsw there is light at the end of the tunnel and there is a way, and I just think just keep hold of the hope. And there is, there is a way, and I just think, just just keep keep hold of the hope I think is a is a really important message because there are people out there that can help you and just, and I would say, and just keep going. You know I know people put a lot of effort in and haven't always got the result they wanted, but but just just be aware that the answer is out there somewhere. If you haven't found it yet, keep keep looking.
Speaker 2:So you mentioned, you mentioned the documentary. What was the real, I guess, motivation for you? Why, why did you, why did you make the documentary?
Speaker 1:like the documentary. Well, back then, even now, but back then specifically, we just went on the map and I would see so many people write into the private Facebook group saying, oh, I went to my doctor, I was telling about my symptoms. They're like, oh, you're just this one-off person Like that, this withdrawal or this syndrome isn't a thing, you're just a one-off. And I would just see all these one-off people. I'm like we're not one-off, like look at us all together, we are not one-off. So I remember expressing really wanting to get a bunch of stories together. I didn't want it to be just anecdotal because I was like no doctor is going to listen to this. So I really was trying to create trust in myself, especially with my YouTube channel. I wanted doctors to feel that they could talk to me and be safe about that. So I not only want to start gathering stories, but I wanted to gather medical professionals who are willing to talk to me about this.
Speaker 1:And some people were like, oh, why don't you just do Zooms? Why don't you just do this or that? And I was like no, I want to go all or nothing in this. So I remember I was like no, I want to go all or nothing in this. So I remember, oh goodness, I created an LLC, I created a website, I had created an Instagram which is what I use now for this platform and just started putting a call out of like, hey, I'm taking donations.
Speaker 1:I have had my YouTube channel for over a year, so people kind of knew who I was and just kind of banked on that. And I remember honestly, I think what got me through a lot of it was like that kind of ostrich, stick your head in a hole, because I was going through a divorce as soon as I tried to start raising money and everything, and it was like my lifeline of everything was falling apart in my life. I was like this couldn't fall apart and I just really wanted a space that one held all our story so you can't say that we're one off that had research be a part of it, that had doctors voices talking about it. I just didn't want to be negated and I was like I wanted something different for us and so to me, a documentary was the best way to put that all together. I have no film training before then, I picked up a camera.
Speaker 1:I love documenting my life, um, but I didn't have any formal training, I just YouTube, university a lot of stuff. I asked a couple friends who did film, you know, in their either spare time or just kind of on the side, and went from there and just I hate using like fake it till you make it. But that's what I did.
Speaker 1:I just, I did as much as training, quote unquote as I could before I took off and I circumnavigated the globe and collected all these stories and edited it all together and then put it up on YouTube, praying that, you know, it would make some sort of difference. I remember being so nervous about it I broke out in full body hives when I put it out Again. The mind is a powerful thing and, yeah, I mean the comments I still get about Preventable that's what the documentary is called is so touching. But what makes me sad about it is people were seeming to find it after the fact that they were already in trouble and that's kind of what spurred this second documentary that I actually have coming out very soon, called Still Preventable, where I interviewed more patients and more doctors and I even had sponsors.
Speaker 1:Now, this time, because of the first documentary, really wanted to push harder on this that this still shouldn't be a thing, that we're fighting against this uphill battle, that people are finding my first documentary because they're already in trouble. Like I want the second documentary to go out to the eczema community, to the skin community. I don't want them to go through TSW. I want them to recognize the symptoms. I want them to be able to understand and be educated to know that there are other paths they can take to help with their health. So I just I want people to know that they can be in control as much as they can be and to use their voice and to make their lives better, instead of just leaning on this one specific drug that can really have horrible repercussions, used chronically.
Speaker 2:Yeah yeah, yeah, I have to say I was gonna ask you what your experience was as a as a filmmaker, and it amazes me that you had no experience, because when I watched that documentary, it just looks like any other professional documentary oh, thank you. Like it doesn't. It doesn't look like someone that's oh, let me, let me do a documentary, can I raise some money? Oh, okay, let's go. Which is basically what? What? What happened?
Speaker 2:yeah you know it is a really, really good documentary. You know I watched it and then that's why I reached out to you and I was like, right, I need to, I need to speak to you, I need to get you on my podcast and let more people know about this documentary, because it's, it's just so good. I guess, as well you know you're, you're obviously you put that together to reach out to people to help prevent other people going to go going through the same issue. But, as you alluded to earlier, I guess it's also for medical professionals as well, right?
Speaker 1:Correct? I really with the first one and especially the second one. I want it to be taken seriously. I want any healthcare professional honestly to just stay curious, to be open-minded. To stay curious, to be open-minded Hopefully that they're hearing it come from the mouth of a colleague as opposed to a patient will help them see, this isn't Santa Claus, this isn't something that is just make-believe. This is a thing, and they have people in their fields trying to figure this out.
Speaker 1:And if they would take it a little more seriously or just be compassionate towards a patient if they are telling you I think I have these symptoms, don't just push them off and be like, oh, just here, either take this immunosuppressant or get out of my office, which is what happens sometimes. And so I really my dream. I've actually put in for a fund and I got rejected. I'm not going to stop, but I would love to be able to create something for medical students, just even if it's a workshop, just something small, about topical steroid withdrawal, because if a GP is the person that you're going to see, most likely to prescribe you a topical steroid, they have basically zero training on how to use it, the strengths, how it works in your system. Just to give them a heads up hey, this is a thing it's still being researched, but these are the symptoms Probably lay off the topical steroid if your patient has XYZ.
Speaker 1:It would be so nice to work with another medical professional to put this together. It would be a dream. I do have someone that's here in the UK that's happy to do it once I have any kind of funding. I mean, he's happy to do it for free, but I'm like I need to pay my bills. I would. That would be a dream to be able to be a part of this next generation stepping up into the medical field to know about this, so that it's not always a patient having to work themselves up to be like all right, I'm going to an appointment today, let me bring my research, let me bring all this stuff to then just be shot down. It should be the other way around they should come in maybe even not knowing what TSW is, and the doctor should be the one like oh I think you might be experiencing this, or I'm afraid that you're going to start experiencing this.
Speaker 1:Let's take you off of the steroid, because we don't want to go down that route. That would be a dream that would be a dream.
Speaker 2:Yeah, that would be amazing. The challenge we have now with modern medicine, sadly, is that medical doctors are no longer being able to beam doctors no becoming algorithm followers, and if they don't follow the algorithm, they get into trouble and the likelihood is their medical license will be taken away yeah, I, I had a doctor even just here.
Speaker 1:I was trying to show her some research even about like it's like a low dose antibiotic. It kind of helped someone in the U S and I was showing her the research, uh about it that this could be a possible route for TSW people or something, and she was like even if I wanted to put you maybe on this regimen, she goes I could have my license taken away. She goes this is not how we do it here, it's all like script for them. So she was like can't do this, like it's either. They follow xyz and that's it. Like there's no wiggle room for anything.
Speaker 2:Um, and not that to say that the research that I had would do anything, but it was just the fact of knowing she's like my hands are tied, I can only do xyz and that's it yeah, yeah, and again going back to what we were, what I was mentioning earlier, you know, when you've got any symptom, you've kind of got two choices you can you can treat the symptom or you can try and find the root cause and try and reverse the root cause. Now, sadly, medical doctors only have one option, which is to treat the symptoms. So you know, as someone suffering from something like eczema, someone suffering from something like eczema TSW, I guess you've got a choice. You can see a medical doctor or you could see someone who's a bit more naturally based, so whether it's a nutritional therapist, naturopath, functional medicine practitioner, but again, I think it's important to find someone that perhaps has experience in that area. Now, obviously, obviously, tsw, probably not many people have any experience of TSW. I mean, there's a lot of people out there that do have experience helping with XMAT. But again, I'll go back to kind of what I was saying earlier when you give the human body what it needs and you give it enough time, the body's amazing at healing itself.
Speaker 2:And you know, and I've, I've had multiple people come to me over the years and they'll say I've got this condition and my doctor said there's nothing, you can do about it. What do you think? And I generally say well, look, what I can guarantee you is I can help you get as healthy as you can possibly. Be right, and my, my view is health and disease can't live in the same body. So if you optimize your health, you can't have disease. Now there are some things that might be irreversible. Like you know, if you have no meniscus in your knee, you know living, living your best life isn't gonna recreate a meniscus. Maybe, maybe, there's some stem cell therapy etc. That might, might, be able to help with that. But in most, most situations certainly my experience the last 28 years if you give the body what it needs and you avoid things that are damaging your body and there's a lot of those around in our environment, sadly then you know amazing things can happen no, I agree.
Speaker 1:Um, I will say as a patient I know this like throws a wrench in some of that when, like even here in scotland, where I'm based at the moment, you get free prescriptions and things like that.
Speaker 1:When it comes to having to seek it out yourself. I know a lot of people like a survey was just put out by Eczema Charity here just what is the financial burden of having a skin condition and it the way to go. But, man, things are costly and I know for families it can feel like such a burden and it's like breaking that down, though I remember a doctor was stating you know, hey, it might feel more costly in the beginning, but think about the horrors that you're saving yourself down the line. So that's something I really try and think about with my own health as well, when I'm paying for a gut test or when I'm about to go pay for a therapist. Yeah, these are upfront costs but hopefully, when you find the right fit, this will help in the long term.
Speaker 1:And that's, I think. The takeaway is it might be a lot of upfront costs, but in the end it's saving you so much friendship and possibly so much more money down the line if you can just get to this root cause and just find what works for you.
Speaker 2:Yeah yeah, for sure. I mean, again, if I look back on my own history and now this is something that I went through and calculated. So in the 18 years that I had acne now in in england we do pay for prescriptions, so it's different. It's different to scotland and obviously, and and I don't know about now, but back then they were heavily subsidized as well, so we were still getting them uh, you know probably about probably about 100, 100 times cheaper than you would pay in the US for the same prescription. I paid the equivalent of around £6,000 for medications and topicals that didn't work and made me a lot worse.
Speaker 2:And if you go and work with someone, it's almost certainly going to cost you less than that to get to the root cause of the problem and be able to heal yourself. Yeah, right, I mean there's probably some people that probably might charge more than that, but you know, if you look at it, it's probably still worth it, right at it. It's probably still worth it, right, because if you can get your life back and you know, one of the things that again, regardless, regardless of the condition, but I would say particularly eczema and tsw is that what you get back is freedom. Yeah, because because when you've got a condition like that, you are a slave to that condition and, as you've described, right, you've got to think about so many things, you know, and you're not sleeping at night and you know it's just worry, anxiety, 24 7. So you're a slave to that. So how much value would you put into getting your freedom back from that condition? It's priceless, right, and you know what I would potentially suggest.
Speaker 2:You know, if someone's suffering and they're thinking, well, you know, okay, that's quite a lot of money to invest, then perhaps do a deal with someone and say, look, I'm willing to invest and I'm willing to do what you advise me to do, but if, by a certain period of time, this hasn't been achieved, then, you know, would you be willing to to give me a money-back guarantee, right? Because then the practitioner is going to have to put their, their money where their mouth is. Yeah, so? So then there's no risk.
Speaker 2:But obviously there is a slight downside to that, if you look at it from a psychological point of view, is that it does perhaps give you less skin in the game, right? So if you kind of think, oh well, um, I've been suggested I do this, but if I don't do it, well, I can just get my money back, right. So there is a bit of a trade-off in that respect because you know, let's say you know, you spend a few thousand pounds, a few thousand dollars, depending on how wealthy you are. I mean, some people that's like, yeah, not worried about that. But for a lot of people, if they're struggling to pay that kind of money, they've got skin in the game. So now they've invested in themselves, they're far more likely to do the things they need to do. You know, as humans, we, we naturally procrastinate and we self-sabotage, right, but again, it's good to have a practitioner that's able to have skills that can help you with those things as well. I agree, yeah. So what? What can people do to kind of help spread the message of TSW?
Speaker 1:So I mean there are resources. It's SAND, the International Topical Stereo Awareness Network, is our nonprofit. They have so many resources for anyone going through it. But to be able to spread awareness and these are topics that I touch upon in the newest documentary Still Preventable in the US we are trying to get the TSW resolution bill signed in each state and if you can just get in touch with your rep, get in touch with the staff of your rep, just so that you can have a Zoom meeting email. If you can see them face-to-face, amazing. Tell them your story and it could be you, it could be your family member, it could be a friend that knows you and just say, hey, this is a thing we would love if you would sign this bill, because it gives us more credit and it gives us a foot in the door. And my mother was actually the first person to ever get the bill signed in Florida or in the US, but it was in Florida. And we have one other person, his name is JP, and he had bill signed in Florida or in the U? S, but it was in Florida. And we have one other person, his name is JP, and he had it signed in Maine. And man, what I love to start a campaign next year about hey, by the end of 2025, if we could have every state have something signed, because we're everywhere, and that would be such a great initiative in the United States to have that behind us here in the UK.
Speaker 1:If you can be a part of any workshops, any conversation that any universities are having. I'm part of a TSW workshop that's UK wide where we're just, you know, trying to work together with other UK medical professionals as a patient to figure out what this is, what to call it, all this different stuff. And then, if you have symptoms, right into the MHRA, there's a yellow card scheme. There's a group called Scratch that here that if you go to their website, they have it all laid out for you. You just need to like, type it in and send it off.
Speaker 1:You know, share your story. I think that's the biggest thing we have, gosh. We have people who are like celebrity status starting to come out with this. Anthony Lexa is doing such an amazing job of sharing her story. She is an actress, she was on Sex Education from Netflix and there's a couple musicians that have this condition. It's just using your story, putting it on your platform and hopefully normalizing that. This is a thing. This isn't something that's made up. So there are quote unquote political routes to take. They're just sharing your story being a part of any type of surveys. I mean, I'm going to be running a half marathon soon with another TSW individual and just things like that. You know, raising money for the nonprofit to help and putting out there. Maybe when you're running you have a little QR code on you and like what is TSW and so people can ask questions. It's just really using your talent and using whatever skill you have, even if it's the gift of the gab. Just share those are ways you can help.
Speaker 2:Yeah, what I would suggest is just if you can make sure you send me all those links so I can put them in the show notes, that would be great. So what does the bill include? In the US, the TSW bill.
Speaker 1:It's just stating that this is an actual entity, that TSW is a real thing, that doctors should be looking out for it, and I believe it's in the bill. It like establishes our TSW day, which is February 3rd, and that just recognizes that as an actual day for this condition. So in the hopes, especially for children and I talk about this in a tiny bit in the first documentary preventable, but this one's still preventable Parents have an extra burden of because their child's under their care, cps can become involved, child protective services. The doctor can say oh, you're, you know it's child negligence. You're not putting the steroid on them. We're going to take your child away if you're not doing this. And it becomes very scary just to have this paper from your state stating hey, this is a real thing. It's just one other tool that you can have against any defense of someone saying oh, you're being neglectful. No, I'm not. Look, look at this, this is like you know. It's government signed. It's stating this is a thing. I have a right to not slather my child in this steroid.
Speaker 1:Like that's not negligence. I'm just doing what I should be doing as opposed to what you think I should be doing. So having that piece of paper, it sounds so silly, but that's just another way that we can defend, especially parents with kids, just to have a leg up in the system and say, hey, we have this and it would help probably also as well get more people curious, more medical professionals, hopefully, get some funding for research. We need to know prevalence. We need to know exact diagnostic criteria.
Speaker 1:Right now in the United States, dr Ian Miles is the first one to ever do a quantitative study, which I was lucky to be a part of, to try and figure out what's going on in our bodies. They did all sorts of stuff and he found out this is a real thing, separate from atopic dermatitis. Do we know everything about it? No, but this is just the start and these are the types of things that if we can get more, you know, bills like this signed or just traction funds will come in for that research yeah, amazing, and hopefully it will stop the gaslighting of patients by by doctors as well that would be lovely yeah, yeah, which is really sad to see and again, I've seen that close up as well and it's so hard for people to deal with when their doctor's just denying what they're being told.
Speaker 2:So what advice would you give someone that's going through TSW?
Speaker 1:Oh, there's so much. I think the top one is know that you're not alone. Definitely reach out to the community. You need support, tell your friends and family. I mean now we have the documentary, so I have preventable. I will have still preventable out very soon. There are other um. I mean there's another documentary called skin on fire. There's another smaller, more intimate documentary called my life during topic steroid withdrawal. Use these resources like lean into it, learn as much as you can, just so that you have that support, and like ask for what you need. A lot of people in your family and friends they have no idea what this is, what support you might need. So definitely ask for specifics if you can.
Speaker 1:I think the other thing is to not lose hope. Like you said, it's awful, it sucks, especially so much in the beginning and a day feels like a year, but just don't give up. Keep putting one foot in front of the other um and I would say document, document, document, document. Take photos. I know that there are so many people that wish they had done that, just so that they can have the proof, and I know it's not. It's not for the meek-minded, because it's hard. There's trauma in this. No one wants it. I don't even like looking at pictures of it anymore. I just feel like I'm inundated with it, especially because I've been editing the film. It's very triggering, it's very hard. But if you just take the pictures and put them away and just label, okay, this was this month and just keep it going, you don't have to look at it if you don't want to, at least you have that when you feel up to sharing your story, that's just really important, especially when you're going to a doctor's office. For you saying oh, I had these symptoms, as opposed to showing that you had these symptoms, is very different. So I'd say document is another big one. And then I would say also just, your mental health is important as much as your physical health, so you do need to see a therapist. Those things like it matters so much. Get that help that you need. We want you here. Get that help that you need, we want you here. So I think those are kind of like the biggest ones and just keep advocating for yourself. If you go to a doctor and they don't want to listen, as much as it's hard to say, all right, I'm not going back to that one, try for the next one and then seek out actual naturopaths. Other means that isn't just pharmaceutical routes that can get to the root cause and things like that and show yourself grace.
Speaker 1:Healing isn't linear, especially with TSW. There are so many ups and downs where one day you feel like it's going in the right direction and the next day you're back down on the floor. Just know it's a day by day process. And the biggest thing, actually, I tend to forget this one Please do not compare yourself to someone else's journey. That expectation is always brutal when you think, oh, I'm going to be better in this X amount of time. When you put that on yourself and it doesn't happen, it kills. So whatever advice you do take from others or you see, oh, this really helped this person or that really helped that other person, we're all different. It may not be the same for you, um, but just take what you can from from people, but don't just sit and compare your, your story to someone else's yeah, yeah, some really really great advice there.
Speaker 2:And one thing I know when my niece was going through her experience, we had a little WhatsApp group with myself, my sister, so her auntie and her, and I think she felt whenever she was having a low moment she could reach out on that group and we were always there for her and I think, from a psychological point of view, I think that was really really important for her and I think I think from a psychological point of view, I think that was really really important for her.
Speaker 2:And so you know, I think, when you brought that point up as well, as you know, have that, have people around you that you know can support you, and if you don't know anyone now who you can reach out and to support to, you know all the links that you mentioned previously reach out to someone, whether it's a Facebook group or whatever it might be. I mean, I know sometimes Facebook groups can be a case of, you know, misery loves company. It can be that as well. So find, find the right group. Yes, I agree with that one. So so just be careful what group you find, but you know, but I'm sure the ones that you've recommended would be ideal.
Speaker 1:I agree with that statement. I'm not very much in the Facebook groups anymore because that's how I felt it could be sometimes, but I think, especially in the worst moments, when you feel lost, they can be a bit helpful. Just because you're trying to find that group and within that bigger group you might be able to find the connection that you're looking for, for that one or two other people that you can make that WhatsApp group with. Because I had a lot of support, like both my parents were great. Like my mother moved me in to hers for a year to help take care of me.
Speaker 1:You know, not everybody has that, but even having that can feel really lonely because those people aren't going through it. It's really hard at the end of the day, even if someone is being a sympathetic ear or compassionate or trying to show empathy, if they're not going through it. You're like, oh, maybe they just don't understand. So sometimes it's good to have that one or two people that you really trust in the community, that you're like man, I'm having to deal with this ooze spot today and they're just like I get it. I get it Also, finding those like golden nuggets from the actual community that can be there for you and you can lean on each other. When one's having a really bad day, the other can help boost them up.
Speaker 2:Yeah, for sure, for sure, Brianna. This has been a fantastic conversation with you and, I think, a really important one as well, but I think I know what you're going to say for my next question but what?
Speaker 1:what's next for you? Um, so one is my documentary coming out still preventable. You can find it on my youtube soon. I have so much other stuff on my youtube as well, from almost a decade's worth of conversation. So definitely, if you want to look at that stuff, happy to have you there. Next steps I actually just finished a year of film school.
Speaker 1:It was more for creative work, not really on the technical side of stuff, but I just want to keep advocating. I want to stay in the health space. I would love to do like consultancy work. I want to help with this community and with the skin community in general, and I'd like to marry the arts with health and how we could use both to spread awareness, spread support. So I've been putting in for like different funds and things, either for exhibitions or workshops or I loved to write a memoir about this one day Just kind of any way to support the community. Hopefully meetups at some point soon. The community, um, hopefully meetups at some point soon. Yeah, I just I want to find a space where I can be helpful, um, and continue advocating until this is prevented yeah, amazing, amazing.
Speaker 2:Yeah, it's interesting, as you were talking then about you know the direction you're looking to go in. It sounds quite similar to me, in a way to Andrew Wakefield. I don't know if you know Andrew Wakefield. That rings a bell. Yeah, so he's made quite a lot of movies now. So he made Vaxxed and 1986, the Act, protocol 7, which has just come out, which I'm hoping he's going to come on and talk about. But he's almost, I can imagine, a good person for you to study because he's done so well getting his message out in its health and it's making documentaries. So, yeah, from my point of view, he's like the original medical heretic and, uh, but in a, but in a good way. Uh, because he's getting the truth out there, but, um, but yeah, so you, you remind me of andrew wakefield and I couldn't I couldn't almost give you a bigger compliment than that oh thank you, my pleasure and and so where can people find you online?
Speaker 2:Where can people find your documentaries, et cetera?
Speaker 1:So my YouTube channel is just Brianna Banos and that's where both the documentaries will be. That's where a lot of different information on TSW is. I have funny videos. I have educational videos.
Speaker 1:I am preventable underscore DOC on Instagram. I am preventable underscore DOC on Instagram. That's where I live most of the time with any sort of information, so that's where you can find me there. And I have my website, briannabanoscom. So I do like photography and stuff on the side. I'm trying to boost that up over here once my freelance sort of visa kicks in, so I have all sorts of information on my website as well. And if you also feel led to buy me a coffee, I also have that on there in case you do watch the documentary, since obviously they're not in a cinema or anything. So if you want to support in any way, you can do that as well. Yeah, those are my main bases and I hope that if you go on any of them, that they're helpful and that you can find a way that you can support yourself through your journey and hopefully pave the way for the next generation to not have to deal with this Amazing.
Speaker 2:Amazing, amazing. Yeah, and again, just make sure you send me all the links you want me to share and I'll, and I'll put them, put them in the show notes. Absolutely, brianna. Thank you so much. You know it's been an amazing conversation. As I said, it's an important conversation and, you know, I really hope you know gets out to all the people that really need to hear it.
Speaker 1:Amazing. Thank you so much for having me.
Speaker 2:It's been a pleasure. So that's all from Brianna and me for this week, but don't forget to join me same time, same place next week on the Radical Health Rebel podcast. Thanks for tuning in, remember to give the show a rating and a review, and I'll see you next time.
