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00:00My favorite part of our job is when we get to meet people doing extraordinary things, which Detroit, there is
00:06no shortage of.
00:07There are people all over the place doing things that, yeah, a lot of people might talk about, but putting
00:14words to action.
00:15Exactly.
00:16That's when it really becomes important work.
00:18And I think it's even more important when you're allowing a vulnerability with people.
00:22Because I think with this specific person, she's allowing us to get into her story, into her head and walk
00:29life with her and also realize that her personal experience is others' personal experience as well.
00:35So they can see themselves in her.
00:37We're talking to a Detroit native.
00:38So she's right here from the day.
00:40She is the founder of an amazing nonprofit.
00:42Her name is Jasmine Espy.
00:44Jasmine.
00:45Hello, hello, hello, hello.
00:47Thank you for taking some time this morning to come in.
00:49Yeah, thank you all for inviting me.
00:51I am so excited to talk to you.
00:53So first, can you explain what you do?
00:56Because I don't know how to pronounce the disease and condition.
01:00And I would like you to teach all of us right now how to say it.
01:03Yeah, of course.
01:03So I am a nonprofit founder.
01:08And my nonprofit works with people living with a complex skin disease called hydrogenated superativa or HS.
01:16And so it creates boil-like abscesses any place on the body that there's a hair follicle.
01:21So the only place you can't get it is the red part of your lips, the soles of your feet,
01:25or the palms of your hands.
01:26But it impacts one in a hundred people in the United States.
01:30Oh, my gosh.
01:30So it is not a rare condition.
01:32And it's very debilitating.
01:33And it has many different stages.
01:36But it's a disease that I'm building awareness about because I've been living with it since I was 13.
01:42And I'm 32 right now.
01:43Wow.
01:43For it to not be a rare disease, and this is the first time that I'm ever hearing about it,
01:47is truly not okay.
01:49Yeah.
01:49But walk us through, what is the impact that that takes on your day-to-day life?
01:55You kind of explained it a little bit, but how does that affect you as a person?
01:59Absolutely.
01:59So because of the presentation of the condition, it creates these boil-like abscesses, but they have this mild odorous
02:06pus that leaks from the skin.
02:08So imagine your skin stretching.
02:10It can be from as tiny as a pea-sized abscess to something as large as like a grapefruit or
02:17larger.
02:18All of that skin filled with liquid, and it eventually ruptures and creates tunneling under the skin.
02:25And so that tunneling is just constantly oozing that pus from the body.
02:31And it creates not only social barriers, but physical barriers and sexual barriers and things of that nature.
02:40So there's a lot of complexities that come with living with this condition that affects you from the time that
02:45you wake up to the time that you go to sleep.
02:47And I always say that sometimes it's even cruel enough to haunt me in my dreams.
02:51I would imagine.
02:52Anytime you have a condition where it's front-facing, where people can walk by and see, it adds a whole
02:58new layer to how you deal with it.
03:00And speaking of dealing with that, I mean, you've been dealing with it for years now.
03:05What does the treatment look like for something?
03:07Is there any treatment?
03:08Yeah, there are treatments.
03:09There are biologics that are on the market.
03:12There are three that are FDA-approved, and there's over 30 that are being developed and researched for our community.
03:19So when you think about psoriasis, our community is on the same trajectory as psoriasis awareness and drug development.
03:28So we have a way to try to get the disease under control, but we still have a long way
03:36to go because there is no cure.
03:38We're still in the beginning stages because over the last 10 years, awareness has just built to where it is
03:44now.
03:44But even now, you're saying you don't even know about it.
03:47So we're not exactly where we need to be, but we're further than we were.
03:51Why was it so important for you to take on this responsibility and become a national leader and advocate for
03:57this?
03:57I know, obviously, there's a personal connection to you, but not everyone just gets up one day and says, I
04:02want to champion for this.
04:04So what was it that really sparked you to be like, no, I want to make sure that people understand
04:08what this is and how we can support each other through this?
04:11Yeah, I've been living with this condition since I was 13.
04:14I actually got my master's and bachelor's in journalism.
04:16And so when I was on my career trajectory, I was I was connected to the work, but I didn't
04:22feel like it was purpose filled.
04:24And so as my training as a journalist, I was just like, this is a community that needs a light
04:29shown on it.
04:30And so I was like, since I have this connection to media, I have this training and I'm also somebody
04:36living with this condition.
04:37I'm the perfect person, the perfect formula for me to go out there and raise awareness and put attention towards
04:44this condition in places that it's never been.
04:46So I just really wanted to make sure that no one suffered in the way that I did.
04:51I've experienced a lot of trauma.
04:53I've experienced a lot of heartbreak.
04:55And I wanted to show people that you can transmute that.
04:58And that doesn't mean that, you know, I'm not trying to kind of like glorify the condition because it is
05:02awful.
05:03But I definitely think that we can take that trauma and transmute it into something that impacts people for generations
05:09to come.
05:09I love that.
05:10We're talking about awareness and the fact that, you know, obviously we're learning about it with everybody else.
05:15Yeah.
05:15Are there any specific groups of people that are more susceptible or signs that you should look out for if
05:22you if you are worried that that HS might be something that you're open to?
05:26Yeah. So HS disproportionately impacts black women and people of color.
05:32And that doesn't mean that other individuals can't get the disease or don't live with it.
05:37Men, women, anybody, race, creed, social economic status, they can go through HS.
05:43But there are certain groups that come from marginalized communities who don't have access, you know, when we think about,
05:51you know, the health care system and, you know, historic marginalization.
05:56And so when it comes to understanding, like how to identify your own symptoms, I always refer to going to
06:02your dermatologist because I'm not certified.
06:04But from what I know from my own experience is, is that, you know, you experience like itching and redness
06:10and lumps under the armpits.
06:13So sometimes it can be symmetrical.
06:14So if you have something on one side of the body, like, say, the armpits, then you'll probably see it
06:18on the other side.
06:19And there's dermatologist Dr. Dave Louie.
06:22He was talking to him.
06:23He's from Wayne State University.
06:24He's a dermatologist studying there.
06:27And he said HS is one of those things that if you think you have it, you probably do.
06:32Wow.
06:33That's so real.
06:34And now you've created this nonprofit and now this summit that just happened this past weekend.
06:39Take us through why this I Reclaim HS Summit was very important for you to have and every year have.
06:45Absolutely.
06:46So Hydrodonitis Superativa takes a lot from us, from our social lives, from our, you know, intimate relationships, from even
06:56being able to go to work.
06:57And so I Reclaim is about reclamation, taking back the things that have been stolen from us, having a sense
07:04of getting our freedom back, getting our voice back, coming from outside of the shadows.
07:09Because we're pushed behind doors because of the presentation of it.
07:12Some people deal with it in areas where you can't see.
07:15So I can put my clothes on.
07:16So like right now, if you looked at me, you couldn't tell I'm dealing with this condition.
07:20But underneath my clothes, you can see that.
07:22And so even though you can't visually see it with my clothes on, there's still a sense of shame.
07:27There's still a sense of, you know, I'm not worthy of love or attention or community.
07:33And so my idea was really to bring together the community so that they could learn from professionals.
07:40Because, you know, as a journalist, I'm like, you need vetted sources.
07:43There's a lot of misinformation going on on social media, especially around this disease.
07:47And we need to have a concentrated space where there can be education.
07:51And not only that, but where we can talk about the lifestyle impacts and what you can do.
07:56One of the things that a few of the things that we talked about was not only advances in research
08:00and therapies, but we also talked about how to deal with it in the workplace, how to date with the
08:05condition.
08:06You know, how to utilize mirror work to help to heal some of the trauma when we are dealing with
08:11this condition.
08:12Somatic healing for, you know, for energy work and things of that nature.
08:17So we made sure to hit all of the different tiers of experience when it comes to living with HS
08:23at this summit.
08:24And the worst thing that can happen to anyone that's suffering with any kind of condition is to suffer twice.
08:28I mean, the condition is bad enough, right?
08:30The mental stigma that goes with it, it just it's unnecessary, but it's a big part of it.
08:35Right. So anyone that's out there, they need information.
08:37They want to know more about the program.
08:40The next summit that comes around, where's the best source for information?
08:43Absolutely. So my organization, ASID, the Association of Hydrogenitis Superativa and Inflammatory Diseases.
08:50We have tons of information on our website and on our social media page.
08:54So you can look at T-H-E-A-H-S-I-D dot org.
08:59And that's T-H-E-A-H-S-I-D on all platforms.
09:03We have a basics booklet that is free that you can look at that has all the information from treatment
09:08to how to get diagnosed, how to connect to community, how to connect to influencers, other organizations, dermatologists, the bevy
09:17of things that really help you to know what steps to take next when you're diagnosed or if you're just
09:22living with it.
09:51Right.
09:53You may not have it. I still believe that you should go on the nonprofit's website and get
09:56that booklet and research and learn what it is because you never know. Your mom could have
10:01it. Your kids could end up having it. And it's better to be that advocate and that ally to
10:05already know how to help someone.
10:07Yeah.
10:07So I just wanted to say that, like, everyone, no matter if you have the disease or know someone who's
10:12affected, I believe that we should all get educated on this.
10:15And I can't tell you how many people in my friend circle have told me, because of you, I've been
10:21able to educate my cousin.
10:23I've been able to educate my coworker. I've been educated.
10:25So it's what I'm doing. Not only is about the HS community, it goes beyond it because awareness is about
10:32making sure other people are aware to help other people who are living with it, but don't know how to
10:37identify what they're experiencing.
10:39That's what the awareness is all about. Jasmine, before we let you go, who does your nails?
10:46My friend Jessica, shout out to Jess Boho Nail Shop on Instagram. She is so talented.
10:53They do look fly, y'all. And they're pressed ones, okay? I don't do acrylic. I can't do acrylic, okay?
11:00What was her pressed ones?
11:01Boho Nail Shop, yes. And she is absolutely phenomenal. Yes. Shout out to Jess.
11:07We have her right now.
11:08I give a plug to have her, dude, because those are dope.
11:11Thank you, yes.
11:12Ooh, I'm following her right now.
11:13Please. Please.
11:15Ooh, and I see the nails right here, y'all. On the Instagram.
11:19We're going to have all the information that you said online at 1051thebounce.com, plus on our socials at The
11:25Morning Rollout.
11:26But Jasmine, we just want to say not just thanks for coming in, but thanks for being a voice.
11:31Yeah.
11:32That's really important.
11:33Yeah. Yeah, I really appreciate it.
11:35You know, it's not easy, but it's something that has freed me.
11:40So because I'm free, I want other people to be free, too.
11:44You know, I don't want anybody else to suffer, and I want this work to live beyond me.
11:49So when I die, I want Asit to touch generation after generation after generation.
11:55That is my goal.
11:56I love it.
11:56Such a beautiful soul.
11:59Jasmine, you are amazing.
12:00Again, all these details will be up on 105windthebounce.com.
12:03Thank you so much for being here.
12:04Thank you. I appreciate you both.
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