Skincredible

Brielle's Inspiring Vitiligo Story: "I'm Famous!"

Elizabeth Swanson, M.D. Episode 30

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0:00 | 48:54

Description 

In this joyous episode of the Skincredible podcast, Dr. Lisa Swanson sits down with Brielle and her parents, Randi and Mark, to share their family's journey with childhood vitiligo. Diagnosed at just two years old, Brielle has grown into a confident, funny, and resilient young girl who proudly says, "It's beautiful," when asked about her skin.

Together, they discuss the emotional roller coaster of receiving a diagnosis, navigating misinformation, finding the right medical team, and balancing treatment with unconditional self-acceptance. Randi and Mark share the challenges of making treatment decisions for a young child while empowering Brielle to love herself every step of the way, including gifting her teachers a vitiligo book at the start of every school year to read with the class.

You'll also hear about the life-changing impact of Camp Victory, the importance of representation through dolls, books, and role models like Winnie Harlow, and the everyday moments that have helped Brielle build confidence. She has learned to answer other people's questions about her skin, how to take charge of her own treatment routine, and even how to be mindful about her own curiosity when seeing children who look or act differently than she's used to.

If you're a parent of a child with vitiligo, someone living with a skin condition, or simply looking for an inspiring conversation about resilience, community, and embracing what makes us unique, this episode is full of wisdom, honesty, and hope.

This conversation is a powerful reminder that confidence doesn't come from skin that is perceived as "perfect." It comes from feeling loved, supported, and empowered to be exactly who you are.


Keywords
Dermatology, Oral Steroids, Topical Corticosteroids, Tacrolimus, Pimecrolimus, Opzelura, Vitiligo, Light Therapy, Sunlight, TSW, Excimer, Narrowband Light, Heliocare, Pulsed Dose Steroids, Oral JAK Inhibitors, Depigmentation, Hypopigmentation, Xeljanz, Koebner phenomenon, confetti depigmentation, Rinvoq, Litfulo, Povorcitinib, Camp Victory

Links, Attachments

Global Vitiligo Foundation’s Camp Victory: https://globalvitiligofoundation.org/camp-victory/

Book Mentioned by Brielle’s Parents on Amazon (NOT affiliated): https://www.amazon.com/dp/0063119978?lv=shuf&channelId=500&plpRedirect=mhFallback 

Chapters

00:00 A Special Message For NPs and PAs

02:19 Intro and Welcome to Brielle

04:10 “I’m Famous at My School” 

05:00 Brielle’s Diagnosis and Starting to Treat Vitiligo

08:00 Winnie Harlow & Michael Jackson Affected by Vitiligo

09:36 Parents Empowering Their Children, Positive Energy

11:00 Brielle’s First Memory of Vitiligo

12:40 Friends as Advocates, New Environments

14:06 Representation of Vitiligo in Dolls and Toys

16:00 Undue Stress Due to Misinformation

19:00 Importance of Experience in Conditions in Trusting Practitioners

21:00 Seeking a Second Opinion

22:45 Camp Victory: A Skin Party

29:30 Spicy Pickles

31:00 Balancing Treatments, Confidence & Side Effects

37:00 Advice for Taking Pills, Heliocare

41:00 Blood Draws

43:00 Parental Words of Wisdom & Advice for Other Parents

46:30 Curiosity and Other People’s Comments

48:00 Thank you and Goodbye





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The information shared on this podcast is for educational purposes only and is not a substitute for personalized medical advice. Always consult your  physician regarding your health.

SPEAKER_00

Welcome to Skin Credible, where we tell you what you should know about your skin and how to glow. Because your skin's incredible.

SPEAKER_01

All physician assistant and nurse practitioner friends, Lisa Swanson here to tell you all about the meeting that should not be missed. This is the NPPA 360 in Boston, Massachusetts. I was gonna try to say Boston in a Boston accent, but I'm not confident up. Boston Boston. Boston? I don't know. How do you like them apples? Anyway, this is how you guys are gonna get Wicked SMOT. You're gonna come to this conference. You're gonna learn all about all aspects of dermatology from excellent clinicians, professors, and instructors. You're gonna learn about cosmetic dermatology, pediatric dermatology, surgical dermatology. You're gonna get all that in three days of action-packed knowledge, you guys. Plus, Boston is a wonderful place to visit. There's amazing shopping, and you can get some lobster rolls. So I don't see any reason why you guys wouldn't want to come. It seems like really the ideal setup. Skin credible listeners will get into the conference for free. Simply enter the code. Go to the website. I'm gonna read it off to you. Get your pens and pencils ready. Www, don't forget the www.pannp360.org slash Boston. Head to that website, type in the code SkinCredible, and you will get free registration to the conference of the year in Boston, Massachusetts, August 14th to the 16th. I'll be there. I hope you'll be there. Hi, everybody, and welcome to another wonderful episode of the Skin Credible Podcast. I'm your host, Dr. Lisa Swanson, and I have some very special guests with us today. I have my patient Brielle and her mom and dad, Randy and Mark. Welcome you guys.

SPEAKER_06

Hi. Hello. Thanks for letting us come.

SPEAKER_01

So, Brielle, are you excited to be on a podcast? Very excited. Very excited. I love that. Have you ever been on a podcast before? Uh no. No. Have you ever seen yourself on like a screen before? Yes. You have? Yeah.

SPEAKER_03

Tell me more about that. Uh I used to do a skin company, Love Every. And I was a model. What?

SPEAKER_02

Modeling? You're big time. It was not a skin company, it's a toy company.

SPEAKER_04

It's a toy company.

SPEAKER_02

Yeah, what is Love Every? I haven't heard that. Um, it's a local Boise-based company that provides subscription-based toys, um, like Montessori toys. Oh my gosh. Yeah. And so her and Mark did a few.

SPEAKER_06

We did a few, yeah. We we did a few for them.

SPEAKER_02

Campaigns with them.

SPEAKER_03

Yeah.

SPEAKER_06

It was pretty cool.

SPEAKER_03

Whenever I go to school and people go to Wahoos, they always see me at the front desk. So they ask, like, was that you at Wahoos in the front desk? And I'm like, Yes. Yes, it was.

SPEAKER_01

I'm famous.

SPEAKER_06

And it's funny because now she's like getting older, so like the picture that Wahoos did, like, uses, she was like a little bit younger.

SPEAKER_03

Six years old. Yeah.

SPEAKER_06

But we've also, but us as a family too, we've done some stuff for Wahoos. We've done um, you know, some ads and things for those guys.

SPEAKER_01

So uh never a podcast. Never a podcast. Well, I mean, I feel like you guys are almost too big to be on Incredible. I had no idea that your depth in the magazines and periodicals was so great. I'm so honored to have you here on my humble little pod. Yeah.

SPEAKER_06

Happy to be here. Uh definitely not famous or any of that by any means. Just some local stuff that we have fun with that. Uh I think people just kind of enjoy our energy when we do things with them. So yeah.

SPEAKER_03

Yeah, yeah. I'm famous at my school. People I can correct it, Dad. People I don't even know ask me questions. Really? And they're like, they know who I am, and I have no idea who they are.

SPEAKER_04

Wow.

SPEAKER_03

Do you sign autographs? Sometimes. At the end of the year, probably.

SPEAKER_01

In the yearbook. Yeah, in the yearbook. Yeah. I love it. I love it.

SPEAKER_04

I love it. Well, it's so funny.

SPEAKER_01

So happy that you guys agreed to come on the podcast and share your story, Brielle's story, with Vitiligo.

SPEAKER_04

Yeah.

SPEAKER_01

We first met in May 2021. So crazy. Which is five years ago now. Brielle was just four years old when we first met. I know. Can you believe it? You were little. I have pictures of you during that ver very first appointment. Um, and you guys had come to see me because of the spots on Brielle's skin. How old was she when you first started noticing spots?

SPEAKER_02

She was two when I noticed her first spot. It was just like a single spot in the center of her chest, really small. Yeah. It had been after being out in the sun, like swimming in the pool. And I just thought maybe it was something that would go away. And then it just never did. And then it seemed like magically overnight. Maybe eight months later, she had a couple of new spots like on the back of her arm and maybe a couple on her back. And so that's when I reached out to her pediatrician and they referred us to a dermatologist. It wasn't to you. And we received like an official diagnosis at that time.

SPEAKER_01

It sounds like it was relatively mild when it first appeared.

SPEAKER_04

Yeah.

SPEAKER_01

Did they start treatment or did they say, well, this is vitiligo and we can just leave it alone for now? Or no, they started treatment.

SPEAKER_02

They did some steroid ointments. Um, and at first I thought that it had made her vitiligo worse because after we started using those, it spread and it became inflamed. It was really itchy. So I had stopped using those ointments thinking that it had um contributing. Yeah. Yeah. And then right after that, we went to you. Gotcha.

SPEAKER_06

Yeah. Obviously, there's different perspectives. Yeah. It's hard because Randy, she's in the medical field. Right. So she instantly found the spot and was like, hey, we need to get this checked out. For me, the way that I kind of grew up. We never really went to the doctors. We never really checked anything out. We always had the once you go and mess with it, then it's gonna be a thing, right? Yeah. And so when she said something about it potentially being Vitiligo, I was like, you're in this world, you're always kind of thinking worst case. It's sure. It's probably not that. When we went to the first doctor, I mean, it was a dot. It wasn't anything crazy. Right. They're like, yep, that seems like it's vitiligo, you know.

SPEAKER_01

Yeah, yeah. And mom, remind the audience of your background in medicine. Yeah, I'm just a pediatric speech language pathologist. Not just she plays herself down to the city. There's no job.

SPEAKER_06

Let me do it. I got it. She specializes as a feeding therapist for NICU babies. I think it's really cool what she does. So she's very immersed in that world.

SPEAKER_04

Yeah.

SPEAKER_06

And she always just says, Yeah, I'm a speech therapist. And I'm like, girl.

SPEAKER_04

Yeah.

SPEAKER_06

Come on.

SPEAKER_01

Yeah. You know, give yourself a little bit more than feeding NICU babies, that's everything.

SPEAKER_02

Yeah. It's more than Nikki babies, but yeah. Yes. Yeah. That's predominantly the population I work with.

SPEAKER_04

Yeah.

SPEAKER_01

This is not what you do, but when I was young, I had to see a speech therapist. And so I was in speech for like a year or two. And now that's hard to think about because all I do is talk. Yeah. And like I'm glad I went through that speech therapy because it is serving me well on a day-to-day basis. Now, when you guys first kind of confirmed the diagnosis of Vitiligo, did either of you have any like prior knowledge of Vitiligo going in, any family members who dealt with it? Or what hit your brain when you were like, okay, it's Vitiligo?

SPEAKER_02

So we don't have any family history that we know of of Vitiligo. I know I was pronouncing it incorrectly initially. And I was just doing research and saw that there was like a supermodel, Winnie Harlow, Vitiligo. Found out that that's what Michael Jackson had. Yep. And so I saw that there was a wide range of how people appeared with Vitiligo. And initially, I would say that we were pretty fearful, not knowing what that would mean for Brielle's future and what kind of stigma for having different skin. Yeah. But again, at the time, she had just a few spots. So I didn't know how it would progress. Yeah.

SPEAKER_06

And again, I I think we come from different perspectives, right? Because of her field and experience of a lot of worst-case scenarios, she kind of started going down that path. And I remember her specifically asking me questions like, I apologize, Brielle. She would ask me questions like, Hey, do you think her dating life is gonna be okay? Do you think this is gonna impact her life overall? And we always just kind of went back to we're just gonna love her, teach her about how beautiful she is, let her kind of gain that strength, and then teach her. Like if anyone's asking, if anyone's saying anything, oh, it's just my bit of Lego. It's part of it. Yeah. And it's such a non-factor.

SPEAKER_04

Yeah.

SPEAKER_06

I wouldn't say non-factor because we don't know how she actually feels internally, but it almost seems like it's such a non-factor just on the outside of you know how comfortable she is with that and how to speak about it. So I think for us, we you know, researched Michael Jackson, and really it was just Randy kind of doing all that and her sending me stuff. And so I think you know, you just go down a rabbit hole and then you just try to build from that.

SPEAKER_01

I mean, I think you guys mentioned something that's I think really, really, really important and vital. As parents, you have raised such a confident, happy, empowered female in Brielle. And, you know, that's a big credit to you guys. And I think absolutely essential when kids grow up with any sort of medical condition, but also just any sort of physical differences, having that positive energy surrounding all of that is so important.

SPEAKER_06

Oh, for sure.

SPEAKER_01

You you don't know she's that powerful that she'll punch her dad in her mouth.

SPEAKER_06

You know, I think on my side of perspective, like I came from the city, I came from the East Coast, a lot of people that already looked like me, right? You know, when I moved to Idaho at uh 18, I went to Pocatello, right? Yeah. And I still had to finish my last year of high school. And I didn't have any family. I came here by myself at 18. And, you know, being predominantly black with, you know, black students going into a predominantly white school, yeah, I knew I stood out 100%. No one could tell me that. So fast forward having Brielle, you know, told Randy, like, well, she's already black, so she's gonna stand out night at home. Yeah, you know. And so we already had that, we already had to kind of work that battle no matter what. Her having Vitiligo and going through that situation, obviously it made her stand out more, but we always just try to tell up. You're gonna be different no matter what. You just gotta own what you are, you know. And I mean, people just people love her. Yeah, I mean, we literally have so many birthdays every week, so many things to do.

SPEAKER_03

So yeah, yeah. Today I have two birthdays to go to. What?

SPEAKER_01

I'm holding you up from two birthday parties? That is a busy, busy day. Brielle, what's your first memory of having Vitaligo? And maybe you don't remember.

SPEAKER_03

That was probably like when I was six, is when I probably remember.

SPEAKER_01

Yeah, like maybe first grade. Yeah. Yeah, yeah. And what grade are you going into now? Uh fourth. Fourth, yeah. And what do you think about your vitile ego?

SPEAKER_03

It's beautiful.

SPEAKER_01

I love that. I love that so much. And what do you do when other people ask you about your spots?

SPEAKER_03

I tell them that it's vital ego, but it can't spread, and they say, is it like a disease or something? And and they some people say I'm a cow. Oh, really? Because of spots?

SPEAKER_01

Yeah. Yes, and how do you handle that?

SPEAKER_03

I say something.

SPEAKER_02

Maybe you just laugh it off. Maybe Yeah. Yeah. Yeah. Sometimes she doesn't know what to say. Right. Right? Yeah. Sometimes it's like Sometimes I don't respond. Yeah. Sometimes you don't want to talk about it. Yeah.

SPEAKER_06

Yeah.

SPEAKER_02

And that's okay. Yeah. And that's okay. We usually have taught her to say, like, oh, these are my spots. Yeah. And they make me unique. Like she's t what she said is it doesn't spread. What she means is like it's not contagious. Yeah. It's not something that you can get. She's actually had quite a few friends who've stepped up and advocated for her. I love to know what to say. Wow. And they'll say, you know, oh, that's just her bit of LIGO. And it makes her unique. Yeah. My friend Penelope. Shout out to Penelope.

SPEAKER_03

Shout out to Penelope. Yeah. Penelope. She's a good friend to you. Yes. Yes. And my friend Brooke and Brooklyn.

SPEAKER_06

For that, you know, always has always been a big proponent of like, you know, staying where we live. Yeah. You know, because we talk about moving or going to where and doing things like that. But I'm like, you know, we have such a community, not necessarily with just friendships outside of where we live in a community, but where the school is located at. She just has so many friends that's now grown with her from kindergarten up to fourth grade.

SPEAKER_04

Yeah.

SPEAKER_06

And it's going to continue through, you know, middle school, through high school. And so she doesn't have to feel maybe like out of place, you know.

SPEAKER_04

Yeah.

SPEAKER_06

Because everyone will know her from the early on. And they just know how to navigate. So I think about things in the future. You think about her, her little girlfriends, you know, want to do a girl's trip out to Denver. And you know, obviously she stands out, no one knows what that looks like. Right. But her friend group, they got her back. Yeah.

SPEAKER_02

So no one's asking about it because they already know what it is. Right. So in new settings, like if she starts a new soccer team, she's getting a lot of questions, and sometimes that causes some anxiety. Sure. But once she gets to know people and they know what it is and they're not asking anymore, she just gets more comfortable. Yeah. Yeah.

SPEAKER_01

Well, and I remember years ago telling you about the Barbie with Vitiligo.

SPEAKER_04

Yeah.

SPEAKER_01

And I think when I told you about it, you already had it.

unknown

Yeah.

SPEAKER_01

Awesome.

SPEAKER_03

I have like a an LOL with Vitaligo. Nice. A Rainbow High one that I'm currently playing with right now. Yeah. And three Barbies. And three Barbies. Yeah, I got the Yeah, I got two guys, but I don't know what happened to the other one. Oh yeah, Atlas threw it onto the roof. Is Alice your brother? No, he's my cousin. Oh, your cousin.

SPEAKER_06

You know, but again to Randy, I mean, really, she's the the big driver because a lot of things that Brio has or that we notice or buy is because Randy is the one that's always on the lookout for. So Randy does a really good job if there's something that's like Vitilego, books, you know, characters, just anything involving it. She does such a good job with just like, I'm buying it and I'm bringing it to the house in the next few days, and then we give it to Brio. And it's just another piece of just showing like this is normal. A lot of people deal with this.

SPEAKER_02

Yeah. Representation. Yes. Um Lego is another one. Yes. Oh, they do? I didn't even know that. Lego does?

SPEAKER_05

Yeah. Yeah. So it's, you know, starting the Lego has the has Vitilego too. You have your Vilago characters in Lego.

SPEAKER_01

That's awesome. Oh yeah. So I literally just picked one up today.

SPEAKER_03

Yeah. I used to have one.

SPEAKER_05

You still have it.

SPEAKER_03

Well, I I gave you I gave you one and I gave mommy one.

SPEAKER_01

Yeah, you still have it. I love that. I mean, I think it is kind of nice when kids with it with something like Vitiligo can see a representation of themselves. I think that helps them feel better, more confident, you know? It's not just them dealing with it. Now, you guys got the diagnosis from one dermatologist and then had a couple of rocky visits. And I know this was like five years ago with another clinician. And there can be a lot of misinformation out there about Vitiligo. What was your pathway like? Did you always feel confident in all the information that was being given to you? Was there misinformation that maybe caused some undue stress even as you were adjusting to the diagnosis?

SPEAKER_02

Yes. Yes. Yeah. So right before we came to see you, we went to a functional medicine doctor. Um, and we were really interested because we knew from my research that Vitiliga was an autoimmune condition. So I was just curious if there were some like natural things that we could do to try to help. And so in that visit, it was like a really long two-hour visit. They got an extensive medical history. And the thing that they really focused on was that we had given Brielle Tylenol when she was an infant for an ear infection. And so they suggested that maybe the Tylenol had caused her bit of ligo. Wow. Or getting her vaccinated. Oh boy. Um, just typical, you know, newborn vaccines. And they um sold us on about $500 worth of supplements. Wow. And told us we needed to do a highly restrictive diet that we had to cut out. I mean, pretty much everything. Everything. Oh my gosh. Legumes, gluten, dairy, corn. And so for a two, three-year-old, it's my gosh, what are you gonna eat? Very limited what she could eat. Yeah. Um we tried that. But that's it. And it was a little bit like scare tactic, I would say, because they were saying, like, oh, if she has even one bite of one of these foods, then you have to start over. And it needed to be like a consistent three months.

SPEAKER_00

Wow.

SPEAKER_02

And so at daycare, you know, we would send specific things for her to eat, but then when the daycare would forget, they would give her something else. And I'm like, like Skittles. So, and then we came to you and you said there's no evidence that supports that. No. Yeah. Yeah. Yeah.

SPEAKER_01

It was a relief to be able to be like, okay, we don't have to give her this highly restrictive diet when she's like well, and again, it was five years ago, and so maybe I'm misremembering, but I feel like the clinician that you guys spoke to had said that she had never treated a child with vitiligo before. But that she thought that these things might be useful. Yes.

SPEAKER_06

You know, again, different perspective, just because medical field versus mine and growing up, not just going to the doctor's a bunch. So kind of like trying to figure it out and talking to all these different doctors and functional medicine and all that. And it's not no offense to anyone, right? It's just as parents, you're just trying to navigate what's best for your child. And and I mean, really, you have to commit to some of these things, right? And and for us not really understanding what's right, what's wrong, we're pretty much doing everything that everyone's saying, right? We're trying to do it all. And then really for us, it was like you're not really seeing much change happen anyway. So then we're like, now she's like missing out on just enjoying herself. Right. You know what I mean? So it's just a lot of information that just comes at you when you when you know you discover this and you know just try to navigate it the best you can.

SPEAKER_01

Yeah, you're trying to do the best for your daughter, you're trying to be smart about it all, and and you know, trusting the people that you see, which I think is important to have trust in your clinicians. Yeah. But I also think it's just so important to like see the right person. Yeah, you know, 100%. Definitely. Um experience matters, not only in the in the condition itself, but in the age group that's being treated. Because things are different in the kiddos than in than in an adult. Uh so I think it's just a point to everybody out there, like see somebody who knows what they're talking about, who's who's treated the condition before in the age group that you're presenting in, and somebody who you can feel kind of trust in. Oh, you know. Yeah.

SPEAKER_06

You know, and I and it's hard, right? Yeah. Because again, if you I mean you think about just where we live in our in our circle of, you know, the information we were receiving, we were thinking and hoping that we were working with kind of the right people, right? So I think like I think for a parent, maybe I'd say is like, you just kind of have to do your research. That's hard for me to say because my wife is in the medical field and she knows what's to what to look for, she has those connections. So maybe as a parent, even even if you have a cousin that's a nurse, you know what I mean? Maybe that nurse may know someone's name. You know, that just gets you a little bit better than just kind of definitely kind of researching on your own. Yeah. Um, because if it wasn't for Randy, oh man, I just don't, I don't know. Like I would be lost.

SPEAKER_02

Yeah. Yeah. Well, I know that the very first time we came to see you, one of his first questions was, Have you ever treated someone? Yes, I remember that. It's like yes, like this morning, I've had like three or four.

SPEAKER_06

I know you're probably sitting there like, Man, dude, I had like 18 before you walked in. You know what? But it's funny though, again, and that and I think that puts it to the perspective again of like parents, right? I think I remember telling her, like, I you gotta kind of have to ask the hard question because you just don't know. Right. And again, she knows because she knows the research and all that, and she probably knows you probably worked with you in some form or fashion. Yeah. But for me, as a parent who has no experience about vitiligo, who doesn't really go to a dermatologist, who didn't even know that dermatologists handed handed vitiligo, yeah, you know, I just kind of came like, have you ever even treated anything like this? You know what I mean? I know, but it but it was still just like the.

SPEAKER_01

I think I even laughed.

SPEAKER_06

Yeah, yeah.

SPEAKER_01

I think I was like, yeah.

SPEAKER_06

Yeah, but I just think for people my position, especially if you're a couple and no one has, you know, the experience of that. Like, I think just in my position, is you just want to make sure you're going to someone that knows what they're doing, has a little bit of um, you know, history under their belt to help you.

SPEAKER_01

So well, and feel free to get another opinion. You know, like if you go see somebody and you're like, gosh, I don't know. I, as a doctor, I do not mind at all when people go get another opinion. Like we all have different uh skill sets. We all trained at different places, we've all seen different patients. We were all trained by different mentors. Every doctor is just a little bit different. And sometimes I learn something from when a patient of mine goes somewhere else. And I'm like, oh wow, that's a neat idea. You know, I'm always open to thinking about things in a new way. And so I never take um, you know, bad feelings about people wanting to get a second opinion because yeah, maybe. Maybe I'll learn something too. Right. You know?

SPEAKER_02

We've gone to Camp Victory, which I'm sure. Yes, we're gonna talk about. Yeah. Um, we've met other kids going through the same thing. And it's interesting where we all share our treatment. Yeah, what we're doing. And it's all different. It's very it's a wide variety of treatment options. And so it is, I feel like we're in really good hands because I feel like we're always doing the different things. And other people are doing what we started with, just steroid creams. And so then I'm like, oh, well, maybe you should ask your dermatologist about this. Right. Yes. Yeah. I mean, even the light units and just basic things where um it's just nice to be able to share.

SPEAKER_01

Well, and I think that segues nicely. I think let's talk Camp Victory right now. Brielle, tell the audience what is Camp Victory?

SPEAKER_03

Camp Victory is a skin type of party type of thing that you can go to if you have a Lego. And um sometimes you don't get invited, sometimes you do. Some and it's very fun because you can meet new friends. Yes. And people that also look like you.

SPEAKER_01

Yes, which is very nice. So Camp Victory, I think Brielle did an excellent job explaining it. It's a party type thing for um kids with vitiligo that was started by Dr. Pearl Grimes, a dermatologist who's wonderful and a worldwide expert in Vitaligo. And she started Camp Victory as kind of a passion project. And Brielle was the first kid signed up for the first year of Camp Victory, and you were the first one to show up on the first day.

SPEAKER_04

Yeah.

SPEAKER_01

I got a sneak peek.

SPEAKER_04

You got a sneak peek. Yeah.

SPEAKER_03

They had jump houses, they had racetracks, they had a lot of stuff.

SPEAKER_06

You know, it's it's so funny. And I'm gonna be the non-professional in the room. Because I remember when this kind of came out, we were doing something where we had to sign up for it. I remember that. Yeah, we were we were traveling and doing something, and Randy's like, we gotta sign up for this thing. And I was like, You're not about to fly my kid to some random. Yeah, to be announced and be have her be there for a few days and be separated with you with some random people. I was like, oh no way this is happening. And they're gonna pay for free. I was like, no way.

SPEAKER_03

It's like this is on my first ever day, he did not.

SPEAKER_06

Yeah, I think well, because they were doing they were doing one pairing at a time.

SPEAKER_03

And you you came on my second one, I think.

SPEAKER_06

Yeah.

SPEAKER_03

And we both went on a bus, and then you had to sit in the back seat.

SPEAKER_06

Yeah, but it but it was but it was funny because like I was very much like, what is this place? This is scammy. I was very skeptical about it. Yeah, but my goodness, it ended up being really cool. She's formed some really cool relationships from that.

SPEAKER_01

Um well, and and for the audience, it's it's sponsored. And so the child and one parent gets to go, and it's held every June-ish. And the first year was in Indianapolis and then Tampa, Tampa in the summer. Beautiful. And then this summer, it was in Charlotte, Colin. Yeah, and Brielle has attended the first two years and made a lot of cool besties. Yes.

SPEAKER_03

One lives in Texas, one lives in somewhere else. I forgot. California.

SPEAKER_06

California. Yeah. And you still kind of talk to them every once in a while, right? Yep. Yeah.

SPEAKER_01

You got swag, like you got gift bags. Yeah. I remember you showing me pictures of all the stuff you got. Yeah.

SPEAKER_06

She came back with that. I came back with a massive teddy bear. Teddy bear.

SPEAKER_03

I was in the If you had a green dot under your seat, then you get a massive teddy bear. And me and all my friends got a m like my size.

SPEAKER_06

Yeah, no, like her size. And I remember them FaceTiming me, and and Randy's like, You're gonna be pissed. I was like, what? And she goes, look at this freaking how are we gonna get this teddy bear? I'm gonna have to go buy another suitcase to get the teddy bear back home. Yeah, it was ma and guess what? We still have that thing hanging around in the like floor just chilling.

SPEAKER_01

But I guess it was either buy a new suitcase or buy the teddy bear a seat on the airplane.

SPEAKER_06

Seriously, like it was as big as she is right now, it's she it's still probably a little bigger than her. It's crazy.

SPEAKER_03

Oh my gosh.

SPEAKER_02

Uh it's like distal now.

SPEAKER_06

Oh, it is okay.

SPEAKER_02

But the camp is awesome because they also have counselors, like volunteer counselors. They do a parent program where they do like a side chat for the parents. Yeah, it's all very intentional. Yeah, it's like programs.

SPEAKER_01

Fun stuff for the kids. They can meet other kids with Vitaligo too, educational and support stuff for the parents, which is cool to like meet other parents whose kids have Vitiligo and learn something at the same time. And I heard that Winnie Harlow was there.

SPEAKER_03

On the second time I went to Camp Victory, she was. And they did this whole talking about thing and her skin care makeup thing she made. She's she's a supermodel Brianne. Yeah, I had no idea.

SPEAKER_02

Briel was not starstruck initially. Yeah. Because she said, What's so special? Like she's Vitiligo, she's Vitiligo, but she didn't recognize at the time how big of a star Winnie Harlow was. Yes. She got to take photos with Winnie Harlow.

SPEAKER_03

She's married with a basketball player, I guess. Wow. And they're like the same height because they're very tall.

SPEAKER_01

Yeah, Winnie is very tall. Yes, yes.

SPEAKER_06

I'm sure he's taller.

SPEAKER_01

Was it kind of neat when you realized that there was a supermodel who has Vitilago also? Yeah. Yes, yeah. I think she's been a really strong advocate for the Vitilago community. It's been really, really great. And then this third year, you tried to go again to Camp Victory. And I understand you were waitlisted. And sad news, you did not get to go this year. How does that make you feel, Brielle?

SPEAKER_03

Sad because maybe my friend, my other friends might have made it. Right. And then I wouldn't be able to go to see them again. Yes. And they had a Michael Jackson impersonator show. What? Oh Jesus.

SPEAKER_06

Like love Michael Jackson.

SPEAKER_03

I'm obsessed with him.

SPEAKER_06

Oopsious.

SPEAKER_01

Oh, well, there's always next year, and I bet they'll keep bringing the Michael Jackson impersonator back. Hopefully. What was your favorite part of the two years at Camp Victory? Was it the enormous teddy bear?

SPEAKER_03

No. I was making new friends and seeing people that look like me and having fun and meeting other people that um hosted the place and stuff like that.

SPEAKER_00

I love that.

SPEAKER_02

And what was your favorite part of Camp Victory, Mom? I think just seeing her confidence grow. Yeah. Where she before, you know, might try to hide her spots. Like she might try to hide her spots when she's going to soccer. And so then just going from never meeting another child with the same skin condition to then seeing it, and they would like compare. They would hold their hands up next to each other and compare spots. I just feel like it really grew her confidence. Yeah. And she just felt like she wasn't alone.

SPEAKER_03

Yeah. I wanna know what so annoying at soccer sometimes, though. Yes. When they scream over and over again spicy pickles.

SPEAKER_01

What is the purpose of them screaming spicy pickles? What does that mean? I don't know. They just go spicy pickles. Is it kind of like so? Brielle, is that like the new six, seven? Is this what kids are saying these days? Is it no? That is over.

SPEAKER_03

Nobody says that nobody says that anymore, except for old people like me. Yeah. Maybe like eight, nine.

SPEAKER_01

Oh, are people doing that now? No.

unknown

No.

SPEAKER_01

Yeah. Maybe. I'm still interested in the spicy pickles thing.

SPEAKER_02

I want to be I like to be hip with the lingo. That was just a celebration when they would score. They would say.

SPEAKER_03

There's five pickles. And I'm over here.

SPEAKER_01

Maybe that was like their mascot. Was their mascot a spicy pickle, maybe? No, maybe. Okay.

SPEAKER_02

All I know is it is unrelated to the leg. Yeah.

SPEAKER_06

But you can see the confidence and and sassiness come out every once in a while. And you know, for me, I'd rather have that a little bit than her to be more inward, passive. Yeah. You know, so it was a give and take for sure.

SPEAKER_01

Yeah. Yeah. And I think she also just inherently feels like comfortable in her own skin. You guys have taught her to embrace her vitaligo and appreciate her differences. We also have gone through a lot of treatments. Um, we've kind of checked all the boxes. We've we've done the topical steroids, we've done the topical calcinurin inhibitors, we've done topical obsolura, um, which was a little bit difficult because of Brielle's body surface area. You can't put topical obsolura everywhere. We've done light therapy, we've done courses of the two days a week oral steroids to shut down flares when she's developed kind of that confetti-like pattern. And then most recently, oral jack inhibitors. We started with one called Illuminant, and now we're trying one called Renvoke. Through all of this treatment journey, what has that been like for you guys? Is it hard to balance, like, here you've created this super confident girl who's comfortable in her skin?

SPEAKER_04

Yes.

SPEAKER_01

Yet we're also kind of doing these treatments and trying to repigment. And like, how do we walk that line?

SPEAKER_06

You know, for me, it's a very fine line because you're right. You're building this beautiful little girl up to be strong and independent and confident in herself, but then you're also shoving medication saying you don't look right. Right. The image that you're that you're portraying is is very mixed. So I think, you know, for us, we always just tell, like, girl, you're you're beautiful no matter what. For now, this medication is to help with your skin for now. If you grow up, you become a teenager and you don't want to take this, that's fine. We just don't want to miss the opportunity if you feel like you got to that age and you wish that we would have done something for you. So for us, it's more so like you look beautiful, we're not trying to change you, we're just trying to help you for the now. You know what I mean?

SPEAKER_01

And I think the other part of that is we know that earlier treatment produces better results. Yeah. And so that does create a tough situation for parents. You know, to treat a child early means you're treating them maybe perhaps before they even care about the vitiligo. But we know that earlier treatment is better. So you're kind of in this situation where like, oh my gosh, do I do this now or do I wait until they're old enough to decide for themselves? But maybe then it's too late. You know, it's it's all of those things.

SPEAKER_06

And it's always crazy because you know, she'll have her moments where she's like, Well, I like my spots. I don't want to get rid of them. Right. So she said that's she has she's has vocally said she likes them, which we want her to like them, right? That's the message we send in. And so then the medication also kind of feels like you're kind of you kind of don't want them to happen. So again, it's just trying to balance, you know, the conversation with her, what we're trying to accomplish so that she has more options when she gets a little bit older. So and you should maybe speak.

SPEAKER_03

I don't know what you I would say something. Whenever I get um like scabs and then they heal, then it turns into the deligo.

SPEAKER_01

That's a good point. Brielle, that's something called Kevnerization. Yeah. Sorry, I have to clear. Yeah.

SPEAKER_02

Go for it. Um, I would say that it is difficult to balance. Yeah. Because a lot of the medications have like a black box warning and they have all these unknown or possibly known side effects. And so as someone who typically looks at worst case scenario, I'm like, oh gosh, what if this happens? You know, I wouldn't want her to have other health issues because of the medication that I was choosing to give to her. So that's been difficult to balance. Um, having, you know, someone who's well versed in these medications.

SPEAKER_04

Done this before, treated, treated the condition before, not your first.

SPEAKER_02

It helps because I feel like we just work together. Yeah. We can make an informed decision based on your experience and what you've seen. So that, and then I would also say it is difficult to balance respecting Brielle's wishes when she says, I like my spots. I don't want to take my spots away. Right. With more so like just trying to stabilize things, which is kind of how I look at it. I would prefer to just stabilize it so that it's not continuing to progress so rapidly. Yeah. Because I do feel like that's something that I would struggle with if my appearance was constantly changing and I felt I had no control over what was happening.

SPEAKER_01

I think that's a big part of it with conditions like vitiligo, allopiciata, eczema, even like that feeling where you don't have control over the situation and you don't know when it's gonna pop up, when it's gonna get worse, what it's going to do, where is it going to spread next. I think that the most common question I get is not, can we bring the pigment back? It's how can we make it stop spreading? And while we've advanced a lot in our treatments to bring pigment back, we don't really have a treatment to prevent the spread. And that seems to be something that a lot of parents are really concerned about because I think it it breeds that I'm not in control of the situation, I don't know what's going to happen next, which makes us anxious, I think, you know?

SPEAKER_06

I think for us it's it's always hard because again, we balance, right? And so when you talk about the oral steroids, that's one of the hardest ones for us because we don't, you know, we understand that steroids could impact her in a different way too, right? And so it's like, what are we giving up just because of the skin, right? What is happening internally? And so I mean, we're going through it right now. I think we just messaged you, hey, let's just do it because and maybe other parents will maybe notice this. We've realized, and again, I say we, but Randy. Randy has realized that it's about a once a year when Brielle kind of has this weird breakout. Yeah. Like, yeah. And and I and again, I think every case is different, everyone has their own different patterns, but we notice once a year around this kind of time frame, I'd say between like May to like August, she kind of has this breakout pattern. And this is the first year where we just kind of held off for longer than we usually have.

SPEAKER_01

Just kind of to see what happens, too. To see if it would stop. Exactly, because we've intervened before, so we didn't really know what would happen if we didn't intervene. Yeah. And so we were just like, well, let's see what happens. And for those in the audience, what we're talking about is sometimes we'll use a little bit of an oral steroid called dexamethasone for two days a week for 12 weeks. So it's a low dose kind of thing just to make it stop spreading. And Brielle, you have taken pills for your vitiligo since you were pretty young when we started pills. What advice would you give to kids about taking pills?

SPEAKER_03

If you have to like swallow them, you should put your chest down so it's easier for you. Your chin?

SPEAKER_01

Yeah. Put your chin down on your chest, kind of like towards your chest. Yeah.

SPEAKER_06

And you should tell them the difference between either you taking a pill or having like the little medicine like powder. Which one do you like?

SPEAKER_03

Oh, oh, the the pill for sure. The medicine. If you do the medicine with the orange juice, it tastes like poison. Butter helio care.

SPEAKER_05

Oh, helio care.

SPEAKER_02

Yeah. So helio care will make uh children gummy or something.

SPEAKER_05

Oh my gosh.

SPEAKER_01

So let's put that out there into the world. Yes, yes. And for the listener, a lot of times when we're utilizing treatments for vitiligo, like especially our topical jack inhibitors and our oral jack inhibitors, we know they work better with sun, and we know sun works better with helio care. So frequently I'm having my patients also take helio care. And you're right, that powder, it doesn't taste very good. So was that the first pill you actually swallowed, Brielle? The helio care? Yeah. That's a big one. Yeah. Yeah. Like this big. Yeah, yeah.

SPEAKER_06

I mean, she was pretty young doing that too.

SPEAKER_01

Yeah. Some of my younger patients who I start on pills put their pills in like yogurt. Did you ever do that?

SPEAKER_03

Or you just did it with cereal and orange juice. One time I did cereal.

SPEAKER_01

I think we've tried a few things.

SPEAKER_02

There we go. Yeah.

SPEAKER_06

I think, I mean, again, I think for us like Rainey and I, like we're we're always open to try things and stuff like that. I think pretty much anything you're gonna tell us to try, we usually try it. Yeah, yeah, yeah. But ultimately it goes down to what's comfortable with uh Brielle, how she wants to do things. And I'm very much big on her being independent on doing things herself and like you know, knowing how things work. So we really try to make her do the things be a part of it. Yeah, yeah, be a part of everything. So, like even when she, you know, when she's brushing her teeth, we used to tell her, okay, don't forget to put the lotion on your face. Right. And she puts it around her lips, she puts it around, you know what I mean? We try to keep her involved, like even with her light. Like, I mean, you know how to do your own light thing now. Yeah. She she goes upstairs, she sets her timers. Yeah. And we how many timers do we set now?

SPEAKER_03

Four minutes.

SPEAKER_06

Yep. And then do we set it on the light and we set it on your um the Google. In the event that she accidentally does more time, the Google still goes off as a backup.

SPEAKER_04

Wow.

SPEAKER_06

So there's there's other ways that, like, you know, we try to, you know, teach her. So I think Randy's really, really good with all the medical stuff. I try to be a little technical with something so she can be involved in it, you know? Yeah. And understand that it's not just us kind of pushing everything, she's doing it too.

SPEAKER_02

So that brings up a good point that it can be taxing, I think, on people. Like all the treatments, all the treatments. Like if you're having to do creams twice a day, it's just it's another thing added to your already busy life.

SPEAKER_06

Yeah, yeah. Like you think about you wake up and we try to give her her medication, and sometimes we're everyone's sporadic trying to get out the door for work, school, and it's like, oh shoot, we forgot to give her her medication. But if you have the medication in all the pill forms ready to go, she knows she needs to like pop open the cartridge and and get her medication out. And so we, you know, we just try to put things in her court too because everyone's busy and it's just hard to do it all. It really is to be consistent. And we talk about that in the office. Oh, yeah. So the more you we can bring her in on things, it helps. I guess I'm gonna say finally.

SPEAKER_04

Finally.

SPEAKER_03

Yeah, but sometimes you even move to a different thing that I was about to talk about. Sometimes I choke up on my medicine, though. Sure. That happens. What do you do then? I d um I just drink more milk. Yes. There you go.

SPEAKER_01

You're a problem solver.

SPEAKER_03

Or I scream to the top of my lungs.

SPEAKER_01

Oh boy. I bet the household loves that. Now, Brielle, I do have another important question for you. The medicine you're on now, you have to have your blood drawn sometimes. Tell tell the audience about that. How do you feel about the blood drawn? The blood drawn is not that bad for me.

SPEAKER_03

Awesome. Like it it all it does is mostly like a needle, uh-huh, and then you put it in and then they do like a couple shots of blood. Like at least like I've uh at least eye shots of blood. Yeah. Like they usually put it right here though. Right.

SPEAKER_04

Yeah. Yeah. Yeah.

SPEAKER_03

Well the veins are so it doesn't hurt. Nah, nah, not that much.

SPEAKER_01

What would you tell another kid your age who had to have their blood drawn because of their medicine? What advice would you give them?

SPEAKER_03

Maybe like on the first time it might hurt them a little bit, but maybe when you start getting used to it, it might be better.

SPEAKER_04

Mm-hmm. Mm-hmm. Yeah.

SPEAKER_03

And maybe bring a teddy bear.

SPEAKER_04

Yeah.

SPEAKER_03

I they used to, the one I used to go to, but then you made me go to a different one. Downtown St. Luke.

SPEAKER_01

And they give me stickers instead of a teddy bear. You could bring your own teddy bear. Bring your own teddy be o b. Bring your own bear.

SPEAKER_06

Yeah. Downtown St. Luke's, they have teddy bear kind of stashed, so she usually gets one and then gets her blood drawn. But we moved to somewhere that's five minutes away from our house.

SPEAKER_04

So easier to go to.

SPEAKER_06

And they do a great job over there as well.

SPEAKER_04

Yeah.

SPEAKER_06

For Brielle, when we first went, I mean Randy, we were more afraid for it than her to get her blood drawn. Especially Renedy.

SPEAKER_01

Yeah. Well, because you don't really know how she's gonna react to it. You know, you're just like, you're like waiting for the potential freak out and you're just you're just not quite sure. Yeah. Yeah. Yeah.

SPEAKER_02

Being in the medical field, I'm like, I want someone who works in pediatrics and has done IVs and draws on other children. Yeah. Yeah. I just know sometimes it's different on small veins. It is, it is.

SPEAKER_01

Now, mom and dad, what what message would you want to send out to parents of kids with vitiligo? Okay.

SPEAKER_02

Well, first I would say that it's okay to be in your feelings a little bit when you first find out because of all the unknowns. And even though it might feel like the end of the world at first, it's actually not so bad. And at least in Brielle's case, it's not caused her any pain. And I feel like it's built a lot of resiliency for her. Um so I would say for parents, just try to find a community of people who've been through something similar. Find a medical professional who's well-versed and familiar with the condition.

SPEAKER_01

Um maybe go to Camp Victory, but maybe not because Brielle needs to get in off the wait list next year.

SPEAKER_02

Yeah. Can you give us a couple years now? Right, yeah. No, that just means we need more sponsors. Right. There you go. There you go. Um and then I would say it'd be great if your child could meet other children with the same condition. There's groups online where you can meet other families. Yeah. Have like a pen pal situation. And then there's a lot of books. And so I would say for like at school type situations, our favorite book, I absolutely positively love my spots. Is that it?

SPEAKER_04

Okay.

SPEAKER_02

We buy that and we give it to Brielle's school teacher every year. Yeah. At the beginning of the year. And so they will read it to the class. And I feel like it just kind of gets it out of the way, like a lot of the questions. And so just utilizing what we have available to us today. Yeah. Because there's so much more representation. So the dolls, the books. Yeah. And then just trying your best to instill confidence in your kiddo.

SPEAKER_01

Brielle, would you ever think about writing a book?

SPEAKER_03

Maybe. Maybe. I think you'd be good at it. So when I get sunburn, I don't feel anything. I don't, even the next day, mom said that we wants to have sunburnt, and the next day would have really hurt.

SPEAKER_01

I didn't feel anything. It was perfect. Now the one thing, do you think it's a smart idea to tell a dermatologist that you get sunburned?

SPEAKER_02

She had her first sunburn over the 4th of July. Right. Yeah, she was playing and stuff. And it was, I mean, her brown skin is a lot more protected than her bit of skin skin. So but we are very diligent about sunscreen. Yes, of course. Just on her white skin.

SPEAKER_06

You know, she's very diligent. Sometimes I'll take her to the pool. She'd be like, Did you put sunscreen on? I was like, I'm black.

SPEAKER_05

I don't really wear it.

SPEAKER_06

So I I gotta be better at that. Um, but you know, I I I think for me, you know, Randy covered a lot of stuff of parents. And honestly, I I do think, especially if your kids are, you know, in elementary school, the book at the beginning of the class um year, have your teacher read it, or sometimes it now that Briel's getting a little bit older, you know, she kind of helps read the book uh to the class. It really just like breaks a barrier between uh kids and stuff, um, just for questions. But you know, I I think just to kind of expand a little bit on the uh confidence part. One thing that we knew initially, once she, you know, had Viligo is that we're not gonna hide this thing. We're gonna put her in clothes for summer. Yeah, we're just gonna treat her like any normal kid would treat her.

SPEAKER_04

Yeah.

SPEAKER_06

And and you know, and we notice, right? We go to Disneyland and stuff like that. I'll put her on my shoulders so her knees are showing, everything's showing, and we know that people are noticed, but I also think because we did it at such a young age for her, and she gets the looks and stuff, she's it's almost like an immune thing now. She knows people looking, but it doesn't make her feel as small anymore, right? Because she was immersed in that. So I just think, you know, do your best to not hide it. Let it be known, let your let your family know what it is, let people create a circle around your child so that when the parents are not around, the kids are having her back too. So I think it's a huge deal to have a community.

SPEAKER_02

So and also um when people are looking and staring, I tell her not to make assumptions. Like they're not looking because they think you're weird or you know, the things that go through her head, right? They're looking because they're curious, maybe they've never seen it before. Right. Or they think it's really neat and they want to ask, but they don't know how. Yeah. And while she may receive some negative comments here and there for the most part, people really like her skin. Yeah. They tell her that they think her skin's cool. Yeah.

SPEAKER_03

When I was at my cousin's house, this one person said that my skin was very cool.

SPEAKER_01

I love that. And what did you say? Did you say thank you very much?

SPEAKER_03

I said thank you, and I said, and she also asked me what it was, and I said it was a Vidal ego, but it's a skin disease that will not spread. Right, right. So if you touch me, it'll be fine. Yeah, yeah, yeah.

SPEAKER_06

And I mean, and I think one other thing that I do to try to rail it home for Brielle, because obviously she's different. People looking at her all the time. I think that there's also other kids, maybe in a wheelchair, maybe with a different disability, maybe something else going on, and she looks at them, right? And she's curious. Yeah. So that's a good way for your kids to connect the dots of like someone's looking at you, it's probably because they're curious. Because you could catch them looking at another child that may have something going on, and that's how they can connect the dots of, oh, well, I am just looking as a curiosity thing. So if you want to help it click, that's a good way that people can kind of help that click for their children.

SPEAKER_01

That's true. I love that. I love that. Well, thank you guys so much for coming in and doing this. I know your time is so valuable, and especially with Brielle's parties. She's got two more parties to go to today. So I'm just thrilled that you were able to clear out some time in your busy schedule, Brielle, to come and do this and beyond Skin Credible. I think you guys spread such a wonderful message about Vitiligo, embracing the beauty of your skin and creating a confident, wonderful daughter. Thank you guys for tuning in. Thank you for watching. Please continue to watch. Please like and subscribe because we have some additional wonderful content coming your way every week. Thank you, everybody.