This episode is bought to you by Quell — to help support rebuilding healthy skin from the outside-in + inside-out!
Take $10 off your next order! Use promo code QUELL10 at check out — Get started HERE!
– – –
If you’re not sure what is Topical Steroid Withdrawal… Imagine living through a condition so painful and misunderstood that it disrupts every aspect of your life, yet the medical community largely dismisses it.
That’s the reality of topical steroid withdrawal (TSW) that also creates life-altering health challenges making it extremely difficult to function, sleep or work; show up as a present partner or parent; or live a fun care-free life for kids with TSW.
And it presents significant challenges for parents caring for children with TSW who may end up being threatened with having the authorities (or child protective services) called on them for refusing more steroids.
As of today, Topical Steroid Withdrawal Syndrome still isn’t accepted by the medical community, often labeling those worried about TSW as “steroid-phobic.” Platforms like TikTok have given TSW warriors a voice thanks to millions of views for these videos, helping to raise awareness globally and sparking legislative efforts which document what causes TSW..
In this eye-opening episode, filmmaker and advocate Briana Banos returns to share her journey and the powerful impact of her documentaries, Preventable, and the newly released follow-up, Still Preventable.
Briana Banos is the creator of the first ever Topical Steroid Withdrawal documentary, Preventable, and the newly released TSW documentary, Still Preventable, which expands on her previous film. From anecdotal stories and doctor interviews, to the history of topical steroids and avenues of reform, Briana continues to shed light on this underrepresented subject.
Her battle with TSW began after years of using topical steroids prescribed for eczema—a common treatment that left her dealing with a condition far worse than the original problem. Her first documentary, Preventable, brought awareness to a scattered and overlooked community. But as her own TSW journey stretched into its seventh year, Briana felt compelled to dig deeper, creating Still Preventable to highlight the systemic issues keeping this condition in the shadows and to empower others to use their voices.
If you’re ready to learn what is topical steroid withdrawal (TSW) and discover ways to make a difference, this is an episode you don’t want to miss. Let’s dive in!
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
In This Episode:
- The inspiration behind Still Preventable and why Briana felt compelled to create it
- What is topical steroid withdrawal and how it’s misunderstood in medical settings
- Shocking historical facts about the FDA’s role in approving topical steroids
- Why TSW is being updated to include the term “syndrome”
- What does being a “long hauler” mean in terms of TSW
- Advocacy wins: how states like Florida and Maine are acknowledging TSW
- Why telling YOUR TSW story helps shift narratives and drives change
- How to get your state to recognize what is topical steroid withdrawal (it’s easier than you think)
- Long-term effects of untreated TSW
- Tips to support individuals and families affected by TSW
Quotes
“We need to stop feeling helpless—if we use our voices together, we can push the needle forward and create change, even if it takes time.” – Briana Banos
“The FDA told us, ‘This is not our problem—you need to bring it up with your doctor,' but patients shouldn’t have to educate their doctors on adverse effects.” – Briana Banos
Links
Find Briana Banos online | Instagram | YouTube
ITSAN Advocacy Page: https://itsan.org/advocacy/
Healthy Skin Show ep. 156: Recovering From Topical Steroid Withdrawal w/ Briana Banos
372: What Is Topical Steroid Withdrawal (And How To Advocate To Get TSW Recognized) w/ Briana Banos {FULL TRANSCRIPT}
Jennifer Fugo (00:13.934)
Briana, I am so excited to have you back on the show to talk more about what is topical steroid withdrawal and how do you get TSW. I know it's been a while, but you're back. Thank you so much for being here.
Briana Banos (00:21.312)
Yeah, I'm so excited. It does feel like forever, but it also doesn't.
Jennifer Fugo (00:26.488)
Well, I think part of the reason is we've been in touch over the years since we got connected. And I just want to remind everyone, not only have you been on the show before, which we'll put your previous episode into the show notes, but it's been amazing to watch the things that you have done since your first documentary, which we talked about in the previous interview, called Preventable, which is where I learned about TSW, what is topical steroid withdrawal, and how do you get TSW.
So now you've got this amazing second documentary that you released called Still Preventable, which I really want to encourage everybody to watch. So congratulations on releasing that. And I thought we would kick things off. What is Still Preventable about and why make a second documentary?
Briana Banos (01:19.798)
Yeah, so when I first even came up with the idea of Preventable, it spurred off of, there was no gathering of voices back then. It was all just you're in the forums and you're told that you're a one-off patient, and that was the constant narrative. And so the first documentary was just about awareness, just bringing awareness to there are many of us, and we are here, and we're not going anywhere. But the second documentary, I'll never forget, I was in Kelly Barta's guest bedroom and I was really struggling. It was back in fall of 2022 and I was about seven and a half years into TSW, which is honestly unheard of, in a sense, of that's a long hauler.
And I was just fed up. I see these initiatives that are trying to be done, but I'm also seeing the numbers growing and I'm seeing the same narrative. So I really wanted to dive a bit deeper and hit certain topics that were really hot in the community and show the community that there are things that we can do. That we are not helpless, that if we use our voice together, we can push the needle forward. It may take time, but we don't have to just sit on the couch and do nothing. So I wanted to just empower people to know the history of eczema, the history of steroids, what the arguments are against us and kind of combat them in the documentary, and then showcase how we can use our voice to push forward and make some change happen.
Jennifer Fugo (03:11.16)
For those who aren't quite sure what TSW is or what causes TSW, I think maybe we should define that for those who, maybe they didn't see your previous interview, or this is the first time ever hearing anything about it. So what topical steroid withdrawal (TSW)?
Briana Banos (03:28.174)
And I know that they're also trying to call it TSWS now, they're trying to add syndrome at the end of it, because withdrawal makes it sound as if, it's like if an alcoholic withdraws from something or a drug addict withdraws from something. TSW is an iatrogenic condition, which means it stemmed from a treatment that we were given, and instead of making us better, it made us worse. And that is what we're dealing with.
Many of us in this community come from an eczema background. And what do you give an eczema patient? Topical steroids. It is the first-line treatment, and some of us have been on it for just a couple months, some of us have been on it for decades. And at some point, we still don't know why, some of us, between 10 and 12% from a study that I believe Dr. Sato did a while back, we will end up with this condition, this syndrome, where it is horrifying and it just completely upturns your life, and no one is really doing anything about it. And that's the gist of topical steroid withdrawal, it's eczema on steroids.
Jennifer Fugo (04:49.144)
I also want to add to this too, because at first I thought it was just eczema warriors who would think about what is topical steroid withdrawal and how do you get TSW. I get this, but I've had psoriasis clients who've developed TSW because they were prescribed steroids like clobetasole, which is a very, very potent topical steroid. I've had clients who have had seborrheic dermatitis, they had rosacea, things that maybe they shouldn't have necessarily been given so many steroids for, but that was sort of what someone thought was the best move. Or they were just using over-the-counter hydrocortisone for a long, long time. And they ended up with this. I also have heard of moms who are applying the creams to their children, and because they're touching the cream, they therefore are exposing themselves to the hydrocortisone and whatever the iteration or strength of that steroid actually is.
So I think it's important to also clarify that this is not just an eczema condition, that there are many people who get exposed to steroids in ways that they might not necessarily assume are bad. Nobody tells you to be careful with the topical steroid. I mean, you said you've been going through withdrawal for, well, the time when you were in Kelly's guest bedroom, you were at seven and a half years. In the time before I guess your topical steroid withdrawal period began, did anyone, any doctor, any physician's assistant, any nurse, any pharmacist, did anyone ever say, hey, how long have you been on this? Maybe we should think about something else, there's potential problems being on this long term. Did anybody say that to you?
Briana Banos (06:47.294)
No. I remember the only concern that my old dermatologist had was that they also had me on oral antibiotics for a very long time, and that was the only thing that they were starting to be concerned with. I mean, I was in the throes of TSW. My hair was falling out. I looked like a tomato. I was oozing. I was crusty. And I went to my university's teaching hospital with whatever little research there was thinking, these people will be curious. They'll want to talk to me. They didn't even write down my history correctly, let alone want to talk to me about the potential side effects of long-term use. So no, it was very difficult to find doctors. Urgent care, I had someone hand me back the ITSAN pamphlet and go, I know what RSS is, and then try and give me a steroid after that. It blows my mind.
Jennifer Fugo (07:50.038)
And RSS, for those who don't know, is red skin syndrome. I just want to make sure, in case we have any newbies here, I want to make sure that everybody is in the know with the conversation. So from the time of the first documentary, and maybe you can share with us what year that came out, compared to now, what's changed in the landscape or awareness of topical steroid withdrawal and what causes TSW?
Briana Banos (08:14.318)
So, Preventable was shot in 2017 and came out in 2019. This is gonna sound funny because I began filming Still Preventable in 2023, and it's brought up in the documentary, the advent of social media, and especially TikTok, honestly, I think blew up this conversation. When I was first shooting Preventable, I didn't have stories that I could go on and talk about what I was doing. A lot of that stuff was not around. But because younger voices are using these platforms, now it's getting some air time. Now you've even got Amy and Dr. Moncrieff, who was one of the doctors in the documentary, they were on Good Morning. And it's just these type of things are able to go more viral, so I think that has helped with the patient side of bringing the conversation around.
And then a couple more people are talking about it, there is a bit more research happening. So we do have more initiatives, especially under ITSAN over in the UK, or here in the UK. There's Scratch That. They have people who have written in to their MPs for parliament now, their own representatives, and it's been brought up in parliament. So between the first and second documentary, on both sides, the more legislative government side and the patient side, there has been more avenues to raise awareness.
Jennifer Fugo (10:03.51)
And there's also been some, I guess, discussions in front of the FDA here in the US about topical steroids, correct? Has that gone anywhere?
Briana Banos (10:13.518)
Correct. I also bring this up in the documentary because it's very upsetting. In the first documentary, I urged people to write in to the FDA because you can say I'm having an adverse reaction to this drug. I still don't know how many people wrote in. I don't even think we can find out, but they have done not very much. In the documentary Kelly Barta, who is the president of the Coalition of Skin Diseases and she was the former president of ITSAN, still worked with ITSAN, they brought it up to the FDA and FDA said this is not our problem, you need to bring it up to your doctor about this. And she's like, typically patients don't educate their doctors, you know?
Jennifer Fugo (11:08.866)
Right, and that also doesn't usually go that well, unfortunately. I wish it did, but I've heard plenty of stories in my clinic and from community members and people on Instagram of horror stories of trying to educate a doctor, whether it be a primary care doctor or GP all the way to like a dermatologist or whatever, and just being completely sort of like stop googling, stop self-diagnosing, that's not a thing. I mean, just being laughed out of the room or even being kicked out of the office because they're being told that they're not compliant. And even here in the US, it is true that there are some families that the doctors have called Child Protective Services on the families.
Briana Banos (11:54.414)
That is correct. That was a big topic I wanted to hit in the second documentary. And I'm very grateful for two families that allowed me into their lives and to rehash and re-share, honestly, the trauma that they went through because they were told they're neglecting their child, their child needs to be on steroids, or their child needs to be doing XYZ. It's just mind-blowing what parents have to go through, that extra added, not just baggage, but horror that your kid could be taken away.
Jennifer Fugo (12:39.094)
I love that you're helping to advocate for the individual as well as the parents and the families, because I think that's so important to give them a voice to help share these stories with the hope of bringing about change. And so one of the really cool things, and I am very grateful that I got to be in some parts of the documentary, but you also interviewed a lot of medical and other health experts for the documentary, or the film. And I'm just kind of curious, were there any common threads about topical steroid withdrawal TSW that came through that are new ideas or different ideas than perhaps where they were at the time of Preventable?
Briana Banos (13:26.584)
I think this is like a, not a double-edged sword, but I think there's more curiosity. So the doctors that are talking about it are a little more open about talking about it, because I know they're worried about being ostracized as well. They're trying to use their words wisely. They want to help educate their colleagues, but they also don't want to be pushed out to the outside where they can't speak to their colleagues anymore.
I really enjoyed talking to Dr. Moncrieff. He was someone that wasn't even on my radar, but he is a retired GP who had a specialty in skin, and the passion that he had around it, it blew my mind. And how someone of his age, retired, was so interested in this, because I have always seen people, or doctors, particularly white, particularly male, not care. They're steadfast in what it is that they've learned in school because god forbid science ever changes and that was it. You know, that's what they're taught and that's what you do. So I found it refreshing that an older generation would be so much of a champion for this cause. I'm trying to think of any themes I've seen but it's more, I know I had Dr. Peter Lio on my first documentary. I find that he's probably the one that talks about TSW most that is, he's the most kind, the most curious about it.
Jennifer Fugo (15:16.312)
He's also very well respected within conventional dermatology, from what I can tell.
Briana Banos (15:20.256)
Yeah. He is someone that has even said he still can be in a room and he still gets kind of like the, oh, here he goes again with the TSW. But at least he is someone that people do listen to. He's on a lot of different boards, he consults many different conferences and things. But again, I think it's just that fine line that some of these doctors are still having to tread on, trying not to be ostracized, but also trying to speak out about this, which from a patient's eyes really sucks.
Jennifer Fugo (16:03.502)
So what you're saying is the doctors who do believe in this, or are curious about it, have a fear, essentially, of saying something that could cause them to feel ostracized or cut off from their peers. Was there any concern that they could get reported to the medical board or anything like that, or get in trouble?
Briana Banos (16:32.192)
I'm not sure about that. I don't want to put words in their mouth, but from what I could see and gauge, many of them are just trying to choose their words wisely.
Briana Banos (17:01.982)
Yeah, of what is the correct thing to say without pushing it too far and not being taken seriously anymore by their colleagues, by the governing bodies that be. So I understand the dance that they're dancing, but from a patient's perspective, who's someone that just lost their marriage, is losing out on time with their children, their job, their bodies they don't even recognize anymore. You're like, speak out, keep talking, stop, care. I get the devastation and I get the desperation of it.
Jennifer Fugo (17:28.462)
Yeah. In the documentary, you talk a lot about some of the historical information about steroids. I've had Dr. Luis Franco on the show talking about that, I've talked to Dr. Ian Myles. I've had a bunch of people over the years kind of touch on how steroids work, but what was some of the most shocking information that you shared in the documentary about them that most people, you've come to find, don't actually know?
Briana Banos (18:04.686)
I had to go down a rabbit hole to look at the history of how steroids came to be on the market. And what shocked me was the papers that I found of it was 34 to 31 that had said, 34 said yes, put it on the market, 31 said no.
I was like, wow, that's a really close margin. What did these people have to say? And some of these articles blew my mind. So in the documentary, I just post four of the arguments that were against TSW (topical steroid withdrawal). And some of them were dead on. Way back in the day, in 1979, I think it was, they knew. They were like, this is going to be you're going to be dependent on this, you're going to need more and more, you're going to have someone who's going to have an adverse effect and then they're not going to be able to sue anybody about it. All these things and I was like, this is exactly what's happening. But because it was way back in the day and everybody uses it now, it's fine. That was the most shocking thing that I had no idea that that was a vote that happened.
Jennifer Fugo (19:21.518)
And was that the FDA?
Briana Banos (19:24.412)
Yes, it was FDA or AAD, I believe it was the FDA. I'll have to go back. It's in the documentary. You have to watch it to find out.
Jennifer Fugo (19:37.774)
You have to watch it to find out. So in terms of a favorite moment in the film, what would you say that was for you?
Briana Banos (19:51.238)
I think one of the things I like is using humor, so hopefully people that watch it, it's very heavy to talk about TSW. Some of the stuff is just awful to have to sit through and watch honestly, so I like to sprinkle a little humor in there. And one of the things that has always been combated was that we're non-compliant, that we're not using enough, so we have the fingertip unit. And the fingertip unit is like from the first knuckle down of how much you should be using on specific body parts.
Now, one of the hugest issues with using topical steroids in general, there's no max dosage. I don't think there's any insert except the one that I found that has a max dosage, and the one that I found said do not use more than 50 grams per week. And I was like, let's do a math session. So I tried to throw some humor in there and do an entire math session of, well, what if you had it on your chest, your neck, your here, your there. Did all the math, and it was way off, like three times as much as you should be using. No one's saying anything about that. No one's talking about that. So that was a part that I enjoyed doing, and I had an animator help to try and make it more engaging. I mean there's so many other parts, but I really liked diving into those issues and trying to make it lighthearted in a sense.
Jennifer Fugo (21:28.268)
And I also really appreciated the personal stories that you shared, and deep respect and appreciation to those individuals who are willing to share such vulnerable moments because obviously now that's immortalized in this documentary. And that takes a lot to want to pull back the curtain and allow someone to see you in such a state, and such a vulnerable state, especially when a lot of the clients I've worked with who have TSW don't want to be on Zoom. They don't want to be on camera, they don't want to go out in public a lot of times. They don't even, they're like, can I work from home? Can I just not, I don't want anyone to see me. Which I very much can appreciate that feeling of just, I don't feel good about my body, my health, or the way I look.
Briana Banos (22:19.683)
Yeah.
Jennifer Fugo (22:25.694)
And for some individuals, I mean, I'm in all the Facebook groups. We’ve got the ITSAN Facebook group, there's all these other topical steroid withdrawal groups, where you hear people sharing their stories and what they go through on a daily basis, struggles with their job, how to talk to HR about their condition. Can they take leave if they get to a really, really bad state? Some individuals have to be hospitalized and end up with severe, severe infections. I mean, this is a very serious thing.
So out of curiosity with all of this, I know it's kind of an odd question, but I think it's worth asking you as somebody who has, A, put in a massive amount of effort to document this whole process, and you've been through it yourself, you're still going through it yourself, and you're really well respected within the community. It's taken a long time for the medical community to recognize this, no matter what country you live in, because you've got people that are talking about this in the US, in Europe, in Canada, in Australia. I mean, this is not specific to one country. What are you most disappointed with?
Briana Banos (23:45.518)
You kind of touched on it. It's the lack of support, and not even just emotionally, I'm talking about the big things. I've never said on record, think I'll say it on here, on record. In 2022, when I had quit my job and everything because in 2021, I had massive hip surgeries that just tanked my health, I was not in a good place and I was having to work my full-time job with my face falling off again and body just destroyed. I wanted to die. I did not want to be here anymore. The only thing that was keeping me going was knowing that my family would have to deal with the consequences of that. And nobody should have to deal with that. You should be on disability, you should be able to be taken care of, you should be able to leave your job for that portion of time.
Again, so that's a disappointment. The disappointment of Child Protective Services, of people taking children away. This is a major health crisis that should be taken way more seriously than it is. And it's so disappointing that people get to a point where they don't want to be here anymore because they have no government support whatsoever when they're going through this.
Jennifer Fugo (25:18.104)
And that's because, from what I've come to learn, it's because it's not a diagnosis. It's not considered a real thing. So if you don't have a legit diagnosis in your chart, you can't apply for disability.
Briana Banos (25:23.277)
No!
Jennifer Fugo (25:47.542)
That's the big challenge here. So there are massive repercussions for the fact that there are problems with these medications that are not being really acknowledged. It's just being branded as, oh, you have severe eczema. That's all it is, it's just severe eczema.
And one of the things that Dr. Myles and I discussed in our conversation about his research and his shocking curiosity, I don't know if that's the right way to put it, but he was shocked and he became curious. So maybe those two things together. Because, you know, honestly, he is a really curious person, and so I love that about him. And he wanted to look into this further. And we talked about also how the potential for how this impacts this whole thing, it's not just about your skin. There's so much more to it of how it impacts your entire body and how it impacts your mood, it impacts your brain, your energy levels, et cetera. So given the fact that this can, for some individuals, and many depending on where they are, how much exposure they have, like in your case you're considered a long hauler.
Briana Banos (26:47.672)
Yeah.
Jennifer Fugo (26:48.588)
You only have so much energy and bandwidth to make change, right? You really only have a limited amount. So what would be your invitation to other TSW warriors, and even the caregivers out there, in terms of how to best use the energy, the little bit that you have?
Briana Banos (27:10.082)
Yeah, so I think one of the biggest things, I mean, there's a couple. I'll try and touch on maybe two, maybe three. Document. Even if you don't want to share that now or share that ever, just take photos of what you're going through and you can put them to the side. Put them away if you don't want to see them. But document. There are so many people where hear messages of, I wish I would have documented this so that I could use it now, or give it to someone now. Because we need all the documentation that we can. And then if you do feel led to share that, there are initiatives right now. In the United States, ITSAN has been trying to push the TSW resolution bill. My mother had it signed in Florida and JP had it signed in Maine. We have a ton more states to go and some people might say, oh this is just like a piece of paper. It doesn't mean anything because we don't have diagnostic criteria, we don't have this, we don't have that.
But imagine having 50 states have this signed and acknowledge this so that maybe a Child Protective Services case comes up and they can say, hey, my state recognizes this. That's a leg up in a court case. Having 50 states have this legislation to say, hey, maybe we should look into pushing for an ICD-10 code so that we can put it in your chart, so that we can go get some diagnostic criteria for you. It's just these initiatives can push things forward. Some people think maybe that's naive, but what else are we supposed to do? Sit and twiddle our thumbs? So to me, these are things that can help.
And ITSAN already has a template for you. So when you're talking about bandwidth and your energy and you're tired, I don't want to write a custom thing to some dude I've never met in my state. Literally, ITSAN.org advocacy page. It is a template, you type your name into it, you can add a sentence or two that's of your own personal story. And you send it out to your representative. And then you put a little reminder in your phone three days from now, if you haven't heard, hi, just checking in. And if you're too tired to do that, employ a friend to do it. Ask people, do you want to help me? You want to gift something to me? Gift 15 minutes of your time twice a week to write into these people and just badger them until you get a phone call. That's what it takes. It's just finding the people in your circle that will help you and be diligent enough to do these things so that you don't have to.
Jennifer Fugo (29:46.254)
Yeah, I think those are two really beautiful points, because you're right. Look at what's happened with, especially, TikTok. The sheer number, when you type in topical steroid withdrawal or TSW, it's a huge amount. And when you start looking at those, you're like, that doesn't look like eczema. Those symptoms don't make sense. Like I was saying, the only reason I knew of TSW was because a client, years ago, found Preventable and she watched it and was like, I don't think I have eczema. To be fair, her case was so strange. I was like, do you have some sort of weird genetic thing going on? Do you have some bizarre disease? It didn't make sense. It didn't present like eczema did. And when she sent me the link to watch it, I was like, oh my gosh, that's why, it's not eczema.
So having that recognized in each state is a huge big deal. And I'm certain we have enough listeners out there that live in all 50 states that could put this template together, which I'll link up in the show notes, so that way you don't even have to go search on ITSAN’s website. We'll put it right into the show notes for you so that you can just go and click on it, download it, and take care of it and make this happen. Because as you said, Florida and Maine are good. We're good in those two states.
Briana Banos (31:09.421)
Yeah, we're gravy in those states.
Jennifer Fugo (31:16.504)
We just need the other 48 states. We need help there. And then also, you were involved with the study done by Dr. Myles. Can you talk a little bit about what it was like to be involved in that research and what your hopes are for future research on this topic?
Briana Banos (31:38.38)
Yeah, I remember I was like, I wanna be a part of history, I definitely wanna be a part of this. And it was actually happening when I was filming. So I got really lucky that when I went to go interview Dr. Ian Myles, I went the day before our interview. I literally flew into Washington, D.C. and took a taxi I think straight there to get all the testing done that they needed. Because this is the first person to do a pilot study. So we have a lot of qualitative research that's being done, anecdotal, things of that nature, but not a lot of quantitative. And for him to have the budget to have done this, it wasn't a ton of people, it was a pilot study, but I know that he is hoping that what he has found through this is able to catapult other people into doing more of this style of research.
And I just loved it. Like you said, he’s a very curious person. I'm trying to think of another word for him, but he just says it how it is. I find it really refreshing. So being a part of that study meant a lot to me because of all the advocacy I've been doing. I was like, I want to play a part, I want to be able to do something in this. So I loved it. And I loved that he really pushed. And he did find that TSW is an entity to itself. We didn't find a biomarker. There are so many things that still need to be researched, but it felt really good even if other researchers want to pooh-pooh it and say there was only 20-something or whatever people in it. The research study that brought in topical steroids to be put into play was, I think, 19 people. So don't sit here and argue with me, there's only this many people in the study. Well, that's how topical steroids came to be in this world. 19 people were studied, okay? So, that's my point right there, this is a basis of having more done and it shows that TSW is an entity separate from atopic dermatitis. So, I loved it and I'm so grateful that I was part of that.
Jennifer Fugo (34:04.748)
And would you encourage other TSW warriors, if somebody else were hoping either universities or maybe the NIH or somebody will do this, but if there is another study opportunity, would you encourage other TSW warriors to partake in those?
Briana Banos (34:22.478)
100%. If there is a way that you can offer a biopsy, or some blood. They're not asking for an arm or anything. But if you can get yourself to that place, you're making history. Know that you are going down in history and being a part of solving this mess. Jump at it. That's how I feel about it. Go for it.
Jennifer Fugo (34:51.021)
For those who are new, new TSW warriors, like they just realized what they're going through is actually topical steroid withdrawal. Do you have any wisdom for them, being somebody who is on the long hauler side?
Briana Banos (35:06.978)
Oh gosh, there's so much. One, come at it day by day. There's so many people with different opinions, and everybody, I think, means well. But go with your gut. Go with what you need to do. Don't allow the judgment of others to cloud your decision making. Go at something, look at the pros and the cons, and do it for you. No one is you, no one knows your circumstance, what you're dealing with inside your head, inside your home. So I think that's the biggest one, because I, for so long, took on the judgment of other people of don't do this, or don't do that. And it took a toll on me after a while.
And then definitely, not that goal making should be pushed aside, but try and take away the expectation of being healed and cured by XYZ time, because that will feel really disappointing if you're not. And try not to go on any crazy, fad opinions of completely cut all of this out or that out. Food fear, you talk about it, that's a real thing, and it hit me for a bit. You don't want to go through that. If you want to work with someone like Jen, that's a route to go. So I would say just take what information you care to take, but there are people who, again, mean well, but you don't have to listen to everybody and what they're telling you to do.
So that's probably my biggest nuggets, and to keep going, find your tribe, love them hard, lean on the community of people just posting positive things. That's something you want to be around because this, it gets really heavy, and to me, I was like, if I'm not laughing, I'm crying. So I always tried to find a bit of humor in this, to find the right voices that I wanted to hang on to, as opposed to, you know, misery loves company. There's a bit of that. Just find the lightness in the dark, if you can, because I think that's what helped me through a lot of it.
Jennifer Fugo (37:36.578)
And you brought up that you don't advise someone to set the goal of I'm going to be healed in six months or a year. I hear what you're saying, because it is good to be like, I want to visualize the healing process, but we also have to be mindful that not everybody's journey looks the same. And that is tricky when you go into some of these Facebook groups where you have people that are like, just give it time. You'll fully heal. It'll all go away. You won't have eczema or whatever you had anymore.
What do you have to say, Briana? And I don't say that to be, I'm not trying to like stir up controversy here, but you're a person that has been going through this for a really long time, and your experience doesn't match that narrative. So what do you have to say about people who make these kinds of claims?
Briana Banos (38:32.034)
So I think there are some lucky people that have been able to just heal. They can eat garbage, they can use whatever products on their skin during that time, they can bathe, no bathe, and they heal. And you know what? Jealous, I'm jealous, I wish that was me. But that's not the case for me. And that's not the case for a lot of people. And I just actually, I made a post about how it almost feels, as a long hauler, when people come at you with you didn't try this, you didn't try that, it's like I almost feel like I'm being blamed for why I am ill. And so if I had just given it time for this past decade? What? That would make you go cuckoo. That's insanity. That's doing the same thing over and over again, expecting a different result of just waiting around.
So yeah, I'm not the biggest believer in just “give it time”. I mean, work on your mental practice, work on, even if it's just self-love, even if it's meditating, even if it's just feeding your body better food. Working with a practitioner, whether it's physically, mentally, emotionally. You need some sort of support, not just, okay, sit on the couch and you watch TV until you go numb. If you have the support to even do that, some people still have to work and take care of their kids and things like that.
So that's one of the things I hate about “give it time”, and then someone's like, no, don't use this XYZ drug, you shouldn't be doing that. Well, maybe you're in a different boat than someone else. Maybe someone has to take care of their kids, maybe someone has to go to work and function. So I wish giving it time was the answer, we would all be cured by now if we just all gave it some time. So yeah, it's a hot topic, but sometimes just giving it time, that’s not an answer.
Jennifer Fugo (40:54.286)
Yeah, I think that resonated earlier on when there was less known about it. There was just less known. I think now to me, yes, I think everything takes time. It's yes, and. Yes, topical steroid withdrawal treatment takes time, and, there’s a little improv there for you, you always go yes, and. It takes time, and it doesn't mean you don't do anything else. It doesn't mean that other things can't help support you.
Briana Banos (41:30.082)
Yeah.
Jennifer Fugo (41:30.528)
It also doesn't mean that one person's journey with topical steroid withdrawal and topical steroid withdrawal treatment is everyone's journey, one person's experience is everyone's experience, as you shared. And I have seen in my clinic individuals who've gone through TSW and now come to me and they still have eczema. They have the eczema that they had before because they thought this entire time, I'll get to the other side of TSW and it's gonna be gone. And it's not. And now they're left thinking, well, did I do something wrong? Was there some magic thing that I was supposed to do that these people did that they just didn't share? I mean, clearly, cyclosporine is not a cure, despite what some individuals like to say, it's not a cure. It can be life-changing for some individuals, but it's an immune suppressor. So what happens when you get off of the immune suppressor, the inflammation that it was suppressing is still there.
So I think what you have gone through with your story, with your journey, even you shared about how you had used Dupixent at one point. And I think we have to destigmatize the idea that your journey can or should not include certain things. It's your journey, period. Your journey is going to look like your journey. And whatever you choose to do, as long as you make those decisions with as much knowledge as you can of the pros and cons, you do you. And I think that's the beautiful thing of what you hold space for. It's the thing that I really deeply respect and appreciate about your message, and about especially what you're trying to help share with everyone through both Preventable and Still Preventable.
So that being said, we want to encourage everybody to go watch the film. Can you talk to us a little bit about where it's available and what your invitation is to those who are going to go check it out?
Briana Banos (43:36.098)
Yeah, so Preventable and Still Preventable are both on my YouTube channel. I wrestled a bit of this is where I put it again, and honestly I just I wanted it to be free of charge. I want people to be able to watch it, I want medical professionals to be able to watch it and access it. I didn't want it to be difficult to find when trying to engage with others, the medical bodies that be. So it's on my YouTube. And what I would love, absolutely love, is if you watch it, if it resonates, one, share it, please. Like, share it around. Take clips if you'd like, I know my mother used a clip from Preventable to try and get the TSW resolution bill signed, and it worked. So you can use whatever you need out of there for an initiative, for anything that you want. It's free, it's out there.
But engage with it. Leave a comment. What resonated with you? What are your hopes? What are you going through? Because if people can see that, and it's flooded with messages of just your story, we're not a one-off, there's tons of us, and we need help. So that's my biggest thing. Engage with it. Share it around. Because you never know. I'm from Florida and I live in Scotland right now. And the amount of people that, just because I shared with my run group or with my cohort of students, they suddenly didn't know that they had a friend who's going through something similar. And then I get connected to them. And honestly, you don't have to just find someone with a skin condition to share this with, because you never know who they may know.
So, you gotta find the community. share it with as many people as you can, because you never know, maybe that person may have a connection to funding for research, something like that. They have an auntie or an uncle who's loaded and wants to help in some way. You never know. So yeah, that's the two biggest things.
Jennifer Fugo (45:53.716)
And sounds like too, that's a really great reminder that if you feel motivated, if you want to take that, because I know sometimes we get really angry at the medical system and we're putting a lot of energy into, I've had some clients, they've blown up the doctor that they did not have a good experience with online and I'm like, could we, I'm not saying that was the wrong step, but could we have directed that energy to something that would be a little bit more fruitful and move the needle more, a little more constructive? And it sounds like helping to get these resolutions passed within each state would be really, really constructive. It would be a really great use of time and energy, especially the limited time that we have. And we could link up to the documentaries that are on YouTube to help explain and justify and show them that this is actually a real thing.
Briana Banos (46:46.934)
Yeah, and tag me. I want to know that you got the bill signed. I want to shout you out, because that's cool, like that's so cool. And go on ITSAN.org and you have your template there and you just have to change a little bit of it. That's how it goes. Send it in.
Jennifer Fugo (46:53.644)
And send it in. So Briana, I will link up to both of the documentaries in the show notes so it's really easy for everybody to find, as well as you're on Instagram. So I'll make sure that people can connect with you that way. And I just so deeply appreciate you for coming back and sharing, and again, congratulations, because it's a big deal. Like you have two documentaries that you've now birthed into reality, sharing something that really impacts people in such a deep, profound way and hoping to make a change so that this doesn't happen to anyone else. And there's something really beautiful about that that I love, and I'm so grateful that you came here to share it with everybody.
Briana Banos (47:48.334)
And I'm so glad to be back on here and to have this platform to talk about it. Because that's the goal, to prevent it. To not have this be a conversation anymore, to know that the next generation may never have to deal with this. And we will have made history.
Jennifer Fugo (48:14.648)
Well, thank you.
