On this episode, I am joined by Jasmine Ivanna Espy. We discuss her experience with having hidradenitis suppurativa. It can be a condition that feels lonely and at times has felt embarrassing. She has prioritized helping others not feel the same and bringing awareness to this condition.
Hidradenitis suppurativa or HS is s painful, long-term skin condition that causes skin abscesses and scarring on the skin.
She founded the Association of Hidradenitis Suppurativa and Inflammatory Diseases. They want to empower people living with HS to better understand their disease state and take courageous action toward receiving treatment, engaging with the community, and improving their overall quality of life. Every year they host an annual summit. This year it will be held June 6-8th, 2024 in Detroit, Michigan. It will be 3 days filled with sessions, demonstrations, workshops, and community engagement opportunities.
I RECLAIM__ HIDRADENITIS SUPPURATIVA SUMMIT — The AHSID
2023 Hidradenitis Suppurativa Basics Booklet (adobe.com)
Jasmine “IVANNA” (@whoisivanna) • Instagram photos and videos
AHSID (@theahsid) • Instagram photos and videos
Ashley (@filledupcup_) • Instagram photos and videos
Filled Up Cup - Unconventional Self Care for Modern Women
On this episode, I am joined by Jasmine Ivanna Espy. We discuss her experience with having hidradenitis suppurativa. It can be a condition that feels lonely and at times has felt embarrassing. She has prioritized helping others not feel the same and bringing awareness to this condition.
Hidradenitis suppurativa or HS is s painful, long-term skin condition that causes skin abscesses and scarring on the skin.
She founded the Association of Hidradenitis Suppurativa and Inflammatory Diseases. They want to empower people living with HS to better understand their disease state and take courageous action toward receiving treatment, engaging with the community, and improving their overall quality of life. Every year they host an annual summit. This year it will be held June 6-8th, 2024 in Detroit, Michigan. It will be 3 days filled with sessions, demonstrations, workshops, and community engagement opportunities.
I RECLAIM__ HIDRADENITIS SUPPURATIVA SUMMIT — The AHSID
2023 Hidradenitis Suppurativa Basics Booklet (adobe.com)
Jasmine “IVANNA” (@whoisivanna) • Instagram photos and videos
AHSID (@theahsid) • Instagram photos and videos
Ashley (@filledupcup_) • Instagram photos and videos
Filled Up Cup - Unconventional Self Care for Modern Women
Welcome to the Filled Up Cup podcast. We are a different kind of self care resource, one that has nothing to do with bubble baths and face masks, and everything to do with rediscovering yourself. We bring you real reviews, honest experiences, and unfiltered opinions that will make you laugh, cry, and most importantly, leave you with a filled up cup.
Ashley:I am very excited. I have Jasmine Ivana Espy joining me today. She is the founder of the nonprofit, the Association of Hidradenitis Suppurativa. Please forgive me if I've said that wrong and inflammatory diseases. Thank you so much for joining me today.
Jasmine:Of course. Thank you so much for inviting me. I'm really excited to talk to you and share my journey.
Ashley:And I do just want to throw out the disclaimer that neither one of us are medical professionals that we're just sort of sharing from personal experience. For anybody who's not aware, can you explain what Hidradenitis Suppurativa is? And I'm going to refer to it as HS, going forward.
Jasmine:Yeah, absolutely. So Hidradenitis Suppurativa is a debilitating chronic skin condition also referred to as a follicular occlusion. Hs consists of painful reoccurring deep seated abscesses that may start as pustules, which are small pus filled bumps, but they can also grow to the size of a golf ball or larger. The abscesses and lesions or nodules are typically painful and release. A very foul smelling puss when they burst abscesses can really develop anywhere on the body that there's a hair follicle and they just don't appear in areas that skin touches skin sort of like how some of the reports say, but they can really show up anywhere that there is a hair follicle on the body. The only place that they can't show up there on the palms of the hands, the soles of the feet. Or the red part of the lips. So I just want to make sure that people are aware of that. Especially when they're considering seeing a physician or wanting to see a physician. There are several different stages of the condition. It's typically diagnosed by symmetrical scarring on both sides of the body. So, for example. Well, if I have HS on this side, it's typically like the nodule, you sometimes get tracks and scar tissue and open wounds and drainage. And then if you see it on this side of the body, the left side of the body, you'll see it on the right side of the body, either in a different area, or in the same area, for example, armpits and so it can be extremely debilitating and it can be very costly to treat because. There are different medications, biologics, treatments, tests, and things of that nature that are available to sort of help patients deal with the symptomology of HS.
Ashley:That does sound like it would be very painful and potentially, depending on where it was popping up, maybe embarrassing at times too.
Jasmine:Yeah, absolutely. I remember, for an example, when I was in high school and middle school was like, middle school is when I developed it. I went to a private school and we had to wear these white college shirts. And so I was sitting. Like two rows before the door. So it's like on the left hand side. My principal came in to make this announcement. And so I had a question. I raised my hand. And so my classmate, like, I'm oblivious to anything that's going on. Right? So my class classmate is like, Jasmine, your arm is bleeding. And I'm just like, I look down and I am embarrassed. And everybody is looking at me and I'm just stunned and I'm frozen because I'm just like, no one knows what this is. I haven't explained this to anybody. And now I have a big blood spots covering my whole armpit on my white collar shirt. And so I was completely devastated. And I was just like, can I go to the bathroom? And I just rushed into the bathroom. I called my mom and I wish she would have handled the situation a little bit better. But, you know, she told me basically, because I had this condition to make sure I bring like an extra shirt with me, but I didn't this day, and so she was kind of upset with me that I didn't, but, being a child dealing with something like this, I've never dealt with a chronic illness. So I love my mom and she is my supporter and she still is and always has been, but that was a moment where I was just like, okay, I really would have wanted for you to say something else to me in a moment where I was embarrassed in front of my whole class and teachers and students and the principal, like, you know, so when we talk about embarrassing moments, H. S. definitely, that was one of the most pivotal ones that kind of like affected me as a child.
Ashley:Well, and especially those middle school and high school years, everything seems like, life or death, like your feelings and emotions are so heightened as it is that. I could see how it would be like, don't ask me if I have another shirt, like just fix this in this moment.
Jasmine:Yeah, exactly. I just wanted to really be held in that moment and told that everything would be okay. Even though I felt like, and I didn't know if anything would be okay. There were no real treatments back in that time when I had H. S. I didn't have a physician who could help me to deal with the symptoms. They were pumping me full of antibiotics and that wasn't helping at all. I put in a myosin and rifampin and I was like, okay, you know, this isn't helping at all. And I'm still getting, H. S. abscesses and I still have open wounds and scar tissue, you know, so it's tough. It's tough at any age, but especially as a child, they can really alter your brain chemistry for sure. Absolutely.
Ashley:When somebody thinks that they might have HS now, would they go to their regular GP? Would they go talk to a dermatologist? Like how is the actually getting diagnosed part.
Jasmine:Yeah, so this can be a bit tricky because not a lot of physicians know about Hidradenitis suppurativa across all practices or disciplines it can be difficult to get a proper diagnosis depending on what stage you have it can present as different conditions. For an example, if you have Crohn's disease, Crohn's disease also comes with lesions that are very much similar to Hidradenitis Suppurativa. Some people have had it mistaken as herpes, because they have the smaller nodules and lumps, which, you know, HS is not a contagious condition. And there's nothing wrong with having herpes or anything of that nature, but it's good to differentiate the two when talking about. Symptomology and then also like the definition of disease and presentation. So when somebody suspects that they have HS, it's always recommended to see a specialist. I want to give a shout out to the Hidradenitis Suppurativa Foundation because they have an archive of different. Physicians that you can basically go on their website and look at a map and get a list of these different physicians that could potentially be near you or in your area. So if you don't have access to someone like that, and they're not close, I would definitely go to see your PCP and ask and talk to them and say, hey, I think I have this condition. Can you look more into this? Ask your colleagues about this condition to see if I can be diagnosed with this and if I can start a course of treatment, I think that's the best way to approach it.
Ashley:What kind of treatment options are available?
Jasmine:So typically when it comes to treatment, the first round of treatment, depending on what stage you're in, is antibiotics. So they'll start you on rifampin. Clindamycin or some other antibiotic medication. And they'll start different courses of that medication at different strength depending on the severity of the disease. And when you think about antibiotics, people automatically think, okay, so there's a bacterial infection, but antibiotics are also, at stage 1, for example, and sometimes stage 2, but not really, it's more like stage 1 HS, which is like moderate. It can help with inflammation. So that's why they prescribe the antibiotics is because of it helps to lower that inflammatory response. So that's usually the typical. First round of treatment, and then there's also depending on how your H. S. is triggered. You might go into hormone therapies, women with periods or people with periods may experience an influx of nodules abscesses, scar tissue drainage around their cycle. So if that's the case, there might be a hormone imbalance. And so there's hormone tests that patients or people who may have a HS or have HS can take to see what. Hormones, they may need to supplement in order to get that balance back to where it needs to needs to be. There's also biologics and other injections. For an example, for biologics, there's Humira, which is FDA approved, and Cosentyx just got FDA approved as well for Hidradenitis Suppurativa, which is amazing. Humira is targeting the TNF alpha gene, and then Cosentyx actually targets a different inflammatory response. So there are two different biologics and they help with two very different things, but they both can be helpful for HS, depending on who you are and things of that nature.
Ashley:Other than say hormones, are there any other triggers that are commonly seen or is something that you've found for yourself that will bring on an outbreak?
Jasmine:Yeah, that's a great question. So typically HS So, I'll say it like this. Everybody's triggered differently by HS. So, if you think about HS patients, think of like snowflakes. No snowflake is the same, apparently, you know what I mean? So I definitely think it's the same thing for HS patients. So, it presents differently in everybody, and we don't know every single trigger, but some of the triggers that we are aware of are some people might have reactions to certain foods. Some people might have reactions to hormonal imbalance, stress can also be a trigger. There's also emotional triggers that there isn't a lot of science behind the emotional triggers, but I have talked to patients who have said that after a traumatic experience with their bodies or an experience that has kind of like altered them in some way that they started experiencing H. S. So there are so many different factors that are involved that they're not exactly sure what, but it's important to pay attention to your body. So like, if you're stressed out and you notice that you didn't have a nodule, then stress might be the trigger. You know, if you eat dairy and you notice that you have a nodule, you're experiencing more drainage, then dairy might be the trigger, but it could be neither of those things as well, but it's always important to listen to your body and to connect the dots as much as you can.
Ashley:That must be really frustrating listening to yourself, checking in with yourself and thinking, okay, stress is my trigger, so I'm going to do everything I can and then for that not to be the case that it must be really frustrating and kind of feel like there isn't a lot of answers out there or that you are kind of, I don't know, like stuck by yourself trying to figure it out.
Jasmine:Yeah, I can feel like that for sure. I know that I can speak to my own journey like. At first, I thought diet was my thing, and I went on this whole diet change a decade ago. I was 350 pounds. So similar to the same size that I am now again. And I lost over 150. I got to like 180 pounds. I was eating AIP vegan. Then I started incorporating more like fish into my diet. And so I noticed that my HS got better and there was one specific moment during this time where all of the lesions under my breasts and on my chest just completely healed up with no medical intervention at all. And so other areas of my body definitely did not heal, but. I didn't have as many abscesses showing up in those areas. And then the lesions in my breast just kind of just disappeared, which was amazing. So I guess what I'm trying to say is that I thought that that was the trigger at that point. And then later on, stress started to affect. My HS and like the presentation of my condition and then it was hormones. Our bodies changed so much that the trigger for HS can change as well. So really dealing with HS is about being vigilant and patient enough to listen to your body because your body is not against you. It's communicating with you. And so once I started realizing that, like, That it's not trying to do this on purpose to attack me. It's really trying to tell me, hey, something's wrong and we need help. The issue with HS is, is that even though we do have treatment options, not all of them are effective. So somebody might go, you know, and try all the treatments and they're still dealing with severe HS. And so it can be infuriating because it's like, what is going to work for me? It's a very complex condition and it. shapes and changes and I've experienced it myself, you know,
Ashley:it must be really frustrating to you because with anything of not knowing the cause of it, the expense that comes through trying different medications or trying different diets or lifestyle things that all of it can seem really frustrating when you're putting the money out and then not seeing the return in the same way. I can only imagine for stress, like there's no way to 100 percent avoid stress completely. And I almost feel like if you're trying to avoid it, then it makes it bigger in a way that it would be really hard for people when that's their trigger.
Jasmine:Yeah, of course. And I want to kind of like rephrase what I said, because avoiding stress is not I'm not I don't mean that in like this toxic positivity type of like mentality, because sometimes it can be interpreted as that, like, ignore your stress and it'll go away. It's not like that at all. I guess one example I can. Provide is that I had my girlfriends came into town and this was when I had a really restrictive diet. I had a sip of sangria and then the next day I had a nodule in the back of my leg. I don't know if that was because of the sangria. All I know is that, you know, after A, B happened, you know so that wound was. Open for a year. It would not close. It would close and open. Close and open everything. Not really that much drainage, but it would just be a hole on my leg. And so during that time, I had a very stressful job. And a year after that, I got fired from my job. And so a week after getting fired. The wound in the back of my leg just completely healed up because I was no longer in a stressful situation and I was actually in a position where I was able to do a lot of the work that I'm doing now full time, which was my passion. So I was following what I had the desire to do. So even though I'm still stressed, like, you know what I mean, but I'm not stressed in a way that I was stressed at that job, if that makes sense. I hope that clarifies that because I definitely think that I still deal with stressful situations for sure. But I definitely think mitigating stress is depending on like, what is this thing? Like, is it causing anxiety in your body? Like, you know what I mean? Are you feeling depleted? Are you feeling like you're not completing your purpose in life, you know, things of that nature. I'm not saying that that's the HS either, but some of those things. help to reduce stress and put you on a path where some of the treatments might help and you never know. You might be surprised at what your body does.
Ashley:Have you found that there's certain products that help? Like, when you're talking about things seeping and having nodules that aren't healing properly, are there things that you found for you personally that work better than others?
Jasmine:Yeah. So there are so many different products that are available for HS patients. I mentioned some of the medications but when we're thinking about sort of like naturopathic or holistic care or just topical I want to give a shout out to my magic healer. If you're listening to this and you want to try out my magic healer, I actually have a code with them. It's Jasmine 10 J. S. M. I. N. E. and that's the number 10. And my magic healer is an all natural product. That has had proven results in the community. So they have on their site. A lot of before and afters of using. These products and things of that nature. So that's a really good product. Clean skin is also another one as well. It's a wash and there was actually a study conducted by clean skin and HS connect, which is another patient organization that basically took the the wash and. They did a study where they would dab a little bit of the wash on the wound and then they would let it dry out and it helped with some of the itching and some of the other symptomology that's associated with HS as well. So I definitely would say my magic healer and clean skin and then there's also clean and cute, which is a soap that is made for people with inflammatory skin conditions. And they've been popular in the H. S. community as well. And so those are a few of the products that I typically recommend when thinking about, you know, how can we like, naturally take care of our bodies, but, some of the medications that I mentioned can also be helpful depending on, what your physician may think is best And also, you know, even with that I want people to know that dealing with chronic skin conditions should be a give and take. So you should also have a say in what you do and don't want to do. If somebody pressures you into doing something, they might not be the doctor for you. You might need to Move on and find somebody else because you don't have to do anything. You are not comfortable with and that's that's going to create more stress and that's going to be counterintuitive to what you're trying to do, especially with the treatment,
Ashley:which is a really good point because not all providers are the same and it really is whatever condition that you're dealing with or any health related things. You do want to make sure that the doctor is advocating with you and that you don't feel like they're only selling you one side. That it is really important to kind of Seek out, which is why it's also really great having the association. Like you said that there are other service providers listed there to be able to feel confident in reaching out to somebody else.
Jasmine:Yeah, absolutely. There's such a large community of H. S. advocates, patients, people living with HS, and it's continuously growing every single day. We're exponentially larger, for an example, on TikTok. If you search the hashtag, there's over 600 million views on Hidradenitis Suppurativa alone. And so when you combine, and there's several hashtags, if you combine all the viewership. On all the hashtags, it's over a billion views. So there are a lot of people who have eyes on Hidradenitis Suppurativa right now. And so that means that there are a lot more voices speaking up. Not every single source is credible and that's no shade to anyone, but that's just what it is. Not everyone is as knowledgeable as they could be, and that's no fault of their own. That's just because of the nature of the condition and the misinformation that's floating around. But I do want to encourage people to reach out and to connect with people online because I've met people online that are my friends in real life, you know, I hang out with them. I just had a person that I met online who cooked for me and her husband a few weeks ago. So, you know, you can really make relationships that last. And then sometimes, you know, when you come out and talk about your experience, somebody else that's close to you might say, Hey, I have that too, but I didn't know what it was called and I didn't really take it seriously, or I just kind of like dealt with it, you know, so you don't know what type of community you might create by speaking about your experience. And then also just like inserting yourself into the communities that already exist.
Ashley:I love that. I also think that's a really good point that a lot of times people will have something and they'll be like, I don't want to go to a doctor, or I don't want to bother anybody, or I'm sure that it's just something that'll go away that they really don't consider that it actually could be a condition and that they should seek help.
Jasmine:Yeah, yeah, and it can be a lot of that is I want to empathize with individuals who feel that way, because dealing with HS, especially depending on where it shows up can be embarrassing and it can be like, you know, I don't want a doctor to see my body looking like this, and that can be a deterrent for going to see a physician or talking to anybody about it because it's like, you know, you might think you're nasty, disgusting, but that's the opposite of the truth. Once again, the body is communicating something and it just needs assistance. It needs help. It needs all the love that you could possibly give. And I know that can be difficult sometimes, but going to the doctor is. Better than not going and trying to figure out things on your own, like shooting in the dark. And some people will argue me down about that. But I definitely think that because I've benefited from both holistic and Western medicine, I think that both have their place and that it's important to do what resonates with you. And to follow whatever path resonates with you, but I always encourage people to go see a doctor, even if you feel embarrassed, even if you feel like somebody is not going to give you the care that you need, that is a step in the right direction. And once you figure out whether that person can help you or not, then you can either redirect, or you can move forward.
Ashley:Absolutely. How has it been sort of broaching the subject with other people? Like if you are dating somebody or do you mention it to friends that if they say something about it, it's that's what it is.
Jasmine:Yeah, so I'm very open about my experiences now and the people who follow me, my friends see my HS content. So I don't have any issues with that. I haven't lost any friendships that I know of because of my Hidradenitis Suppurativa I might have, I don't know, but you know, we all have friends.
Ashley:You wouldn't want them anyways, if you did, like what an awful reason to.
Jasmine:Exactly. You know, some people don't like dealing with people with disabilities and chronic illnesses because it's drag, whatever. And it's just like, okay, well, you're not my friend and that's fine. There might be this grieving process that we go through, but, you know, that's a part of life. But as far as dating goes I still have fears around. My HS and dating because I've never really had a substantial relationship like a real romantic relationship. So, there's fear still around for me on whether somebody will accept it or not. So even though I haven't necessarily had negative experiences. Honestly, I just definitely have not been open enough to trust somebody to reveal something like that. I think the last person that I was sort of like intimate with they followed my Instagram. So they asked questions about it, but they didn't stop talking to me because of the condition, and I'm not afraid to talk about my experience or anything like that. But I have so many people around me who have been in successful relationships along with being HS. I also have people who are in my circle who are married and happy marriages for long periods of time. Some of them just got married, you know, and then some people have experienced, being separated from partners because they developed HS. It's really about that individual's capacity to be able to support someone who has a chronic disease and just like in friendships where it's like. It's not your fault if somebody's like, I can't deal with this. It's the same thing with romantic relationships. And that doesn't mean that you won't go through grief. It doesn't mean that it won't hurt. It just means that there's sort of a clearing that's happening in your life. So it's like, okay, that person is not going to support me. That person's not going to love me the way that I need to be loved. So good riddance, you know? So it can be complicated for some people. But not everybody experiences those complications and not everybody's going to reject you because you have HS.
Ashley:I have a girlfriend who has it and she has found sometimes it can make a bedroom activities. It's a little bit harder just because, when you do have a wound and it is open, it's not something that's comfortable or she'll get I'm not sure what medication it is, but essentially they'll inject it in the root to make the nodule go away that it at times, yeah, that at times it can kind of make it, I think so, just painful and uncomfortable. Yeah, again, with the right person, it makes it all work, but I know that that's something that at times can be an insecurity of hers.
Jasmine:Yeah, absolutely. Intimacy and H. S. It's difficult to navigate and actually, we just did my nonprofit H. S. or acid just did a, collaboration with Tonal Health, which is a telehealth platform along with Dr. Erin Martinez Jasmine Young, and her partner, Kenneth Blue, and so we have part two coming up, actually, to talk about some of these things, you know, how do you deal with intimacy when you have a chronically ill body? How do you explore your sexuality with your partner or by yourself and things of that nature? Because it's important, you know Chronically ill people, disabled people have sex, you know what I mean? So it's important to know how to navigate that and what to say where to tell people to touch and where to tell people not to touch having all of that language and understanding is empowering, you know, it might be awkward at first because they're still trying to figure out like, what do I like? Don't I like, you know but it's a learning process just like anything else. And I think HS provides us the opportunity to be really, really conscious about that.
Ashley:Which I guess like a blessing and a curse. I guess like the blessing of it is that it does make you more aware of your body and more aware of, what you like and what you don't like. Even if some of the places that you want to be touched may change depending on if there is a current is outbreak the right way of saying it?
Jasmine:I would say abscess or flare. We call them flares.
Ashley:Flares. Are there any other like internal symptoms that come with this disorder? Like pain within the body or other things similar to that?
Jasmine:Yes, that's a good question. So, some individuals might experience, like, pain in the site that the flare might happen. So, for example, if you have it in your armpit, you might experience, like, you know, intense itching or redness or tenderness in the area and then the next day or the next couple of days, you might. You end up seeing a nodule there you might experience flu like symptoms. So it might seem like, you're coming down with, some flu for the flu season covid or something like that. But it's really your body trying to fight this abscess or this nodule, this flare that's popping up on your skin. Some individuals might experience. Redness, the tenderness, the itching, the aching, and the flu like symptoms. Those are sort of like the internal symptoms that are experienced.
Ashley:We know that there's no cure for HS, but are there options? So like if you do end up having a flare that leaves scars behind, is it possible to have surgery to have them removed? Or would it end up being that you would get another flare and then kind of defeat the purpose of it?
Jasmine:Yeah, so there's several different ways to approach this and it's dependent on how inflamed and severe the site is so, for me, for an example, I got CO2 laser and it's just basically a laser scalpel that is used to cut out the affected part of my skin and then to kind of, like, open those tunnels that are under the skin and then burn them off so that they don't so you can do the same thing with a scalpel surgery as well. But I did that and the first thing that I had to do in order to get to qualify for that surgery was actually lowering the inflammation in my body. So if I were to get that before, like, while I was still experiencing, abscesses every day or every week or something like that every month, then it wouldn't be a surgery. That would be extremely beneficial because there's a chance that it could reoccur in that area. There's deroofing as well, which the roofing is just for an example. If you have a nodule on your armpit, they would just open it up and allow it to drain and keep it open and it will close on its own. And so it's supposed to essentially stop that site from having such an inflammatory response. But sometimes de roofing. Is not helpful and it can cause more problems because another abscess can pop up on top of that open wound. It happens so often and that can create like webbing and, that web, like scar tissue and things of that nature,
Ashley:which again, sounds extremely painful and then again, healing once the de roofing happens. Because I think that is another thing that my girlfriend has gone through, where the de roofing can also then, you're kind of uncomfortable and in pain, and especially when it's in an armpit, like, it's not like you can just keep your arm raised up, that it's really rubbing together or having your clothes be on it, that it can be extremely painful and uncomfortable.
Jasmine:And, you know, too, there are wounds. So, like, for my CO2 laser procedure I experienced something a lot different than some other people did because my physician is one of the top physicians in the country for HS maybe arguably the world. And so he had a lot of information about, the surgery in general, dealing with my, wounds and then also he had a wound care specialist in the room who helped me to figure out how to take care of it. So it wasn't just left open. And then I had to put my shirt on and I just had this big open wound on my arm and it shouldn't be like that at all. And if anybody's experiencing that, I would encourage you to ask your surgeon or the physician who's operating on you to find a wound care specialist. That you can talk to so you can talk about what you can do to take care of the wound to help the healing because you shouldn't be uncomfortable and that, you know, I've heard stories of people not having any type of wound care after they're like, yeah, they just sent me home with my wound open and I'm just like, what, what do you mean, you know? And it's no fault of theirs, you know, so that's not me blaming them, but it's just it's a misstep for the person who is working on the wound, you know? My wound care specialist, you know, I put Vaseline on it and then I put Telfer and then I put gauze and then I put tape and I would put a lot of Vaseline on the wound at first and then I would taper it off eventually as the wound closed because sometimes the Vaseline. Creates a barrier for the skin so that it can grow. And I'm probably not explaining that well, because I don't know all the science behind it. But it helps for the wound to close. And so over time you reduce the amount of Vaseline so that it can help for it to, like, close completely., there's wound care procedures that have to happen post op. that are helpful.
Ashley:Well, thinking about the fact that it attacks the hair follicles, are there things like laser hair removal or. Sugaring or waxing. That help not have a flare up?
Jasmine:So, there are studies that laser hair removal can be helpful for people dealing with HS. It helps with inflammation around the hair follicle, for sure. It can help. More with certain stages than others. So this once again might be better for people that have moderate HS than it is for mild and severe because the in the later stages of the disease, it might not be as effective because of the disease state and the levels of inflammation. But when you have mild HS, it might be more helpful because there's not that much inflammation in that area. Sort of like, you know, interconnected tissue, all these tunnels and all this other stuff that's going on. So, yeah,
Ashley:that makes sense. Is HS something that could be tied to genetics?
Jasmine:So there's more research that's developing about this, but from some of the research that we have thus far you know and speaking specifically from my experience, I have a cousin on my mom's side who has HS. And so I have H. S. So for us, it might be genetic and there's other individuals. There's another woman that I know her family has a just her brother. She has it, you know, her father had it. So it could potentially be genetic. And then other people may experience just getting H. S. and no one that they know of in their family has it. So, it can potentially be triggered by genetics. It's important to kind of look into the epigenetics and sort of like study a little bit about how certain environmental factors and triggers can trigger disease states in our bodies as well. Because I think that'll help to kind of like clarify some of that information to do.
Ashley:In some ways, like not that you would hope that your family has the same condition, but in some ways it also must make it a little bit easier to be able to have that. I don't know, like sounding board of saying like, this is what sucked for me, or this is what worked for me and really not feel so isolated, even within your family.
Jasmine:Yeah, I would say from my experience, it makes me feel like oh, it's like that feeling of like, oh, so that's where that comes from, you know, even though we don't know where it originated after that, but it's just a sense of comfort that I felt like I feel. When I know that my cousin has it too. I wish neither of us had to deal with it, but there's a greater sense of community knowing that I'm not the only one, the anomaly in my family that's dealing with this condition.
Ashley:If all of the medication that the doctors give you, if you go down that road, if You continuously take that, or even if you go like, in the natural path route, is there a way to kind of make it go into remission? Or is that something that once you're in stage 1, it'll continuously develop.
Jasmine:So so 2 things remission is possible. Absolutely. The 2nd thing is that as far as like the progression of disease, there's still studies coming out to. Corroborate whether, you know, if medical intervention during the mild stage does that prevent it from getting to severe, you know, H. S. So I'm not going to speak to that just because I don't know all the information, but what I can speak to is like the remission aspect of things like I've gone through remission myself. I'm in remission now. I'll experience some type of inflammation here and there. But like, for example, I had a nodule that was showing up on my ear, like right here, and I could feel it and it was itchy at the same time as, you know, also being a mass there and it just went away. So it didn't burst or anything like that, but remission is definitely possible and it can happen for individuals. In various ways, you know, I experienced it from like diet, stress management and those were my main things and somebody else might experience it from, you know, taking a biologic or getting a certain surgery or treatment, and then somebody else might not experience it at all, which is the double edged sword of dealing with hidradenitis suppurativa.
Ashley:I know that you are really open about it, but are there any questions that you wish that people wouldn't ask about it or that they wouldn't bring up?
Jasmine:I don't think there are questions that I wouldn't like anybody to bring up. I think that sometimes I've noticed this might be a projection. So I don't know if this is really true, if it's just my projected idea, but I've definitely experienced people act weird around me, like sharing things with me because they know I have HS. Which is very strange because it makes it seem like it's something that they can catch, which it's not, you know and then it also it's also the assumption that I'm not taking care of myself to the point where I wouldn't pass it on to someone else if it was contagious, but it's not, you know so that can be that's not more of like a question. That's more of like an action of how I'm treated. So if anything, I would just say for those who may have lovers, caregivers, or anything of that nature that has HS, just be careful how you react when you see things, you know what I mean? Or when you're experiencing things with your partner, you know, if you have a friend, don't make them feel isolated, don't make them feel like, Oh, because I shared. A pair of pajama pants that, Oh, you can keep those. Like, you know what I mean? Because you think you're going to get HS, like. That's ignorant. You know what I mean? It's ignorant and it perpetuates shame and a desire to be, to not be vulnerable with people that, you know, people with HS need to be vulnerable with.
Ashley:Which is a really important factor too. And I guess like the flip side of that is like, then ask me, ask me if it's contagious, ask me about these things, because obviously you're internalizing things and then projecting them on me instead of just saying, you know, is it something that I could catch? Just anything that you feel unsure about? Because yeah, it really doesn't matter as far as that goes. We should be able to be in the same space and it's not like a virus in that sense.
Jasmine:Exactly. Yeah. And I think that any skin condition can make people feel like ill. I don't want to come close to this person because what if I get it? Like, that's disgusting. I don't want to look at it. Like, you know what I mean? And everybody's entitled to feel how they feel and whatnot. Like, so I'm not trying to police how people feel, but if you're a friend of someone who has a chronic skin condition or chronic illness in general, you know Don't be a jerk. Like, you know what I mean? If you can't deal with something, then exit yourself out their lives. You know what I mean? And just respectfully, you know, it's gonna hurt the person for sure. But I just think they're better off without you being a jerk to them. Because they're dealing with something that you couldn't imagine. And you think looking at it is bad. Think about what it feels like to deal with it every single day. You know what I mean? We have the same reaction. We got it. So it's just, you know, let's not create an environment where people feel shameful about what they're dealing with, especially if they can't control it.
Ashley:Yeah, we really should have more empathy and compassion for people and be less judgmental. It is one of those things. If you're somebody who's like, oh my gosh, that looks so bad or I wouldn't want that. It's like then remembering. That other person does have that. So it's, it's really, I don't know, not being so shallow and superficial that way too.
Jasmine:Yeah, absolutely. And, you know, like I said, everybody has their preferences of things, you know, I'm not going to get into a deep dive into, like, everything I'm thinking about, but I just want to encourage patients to realize that there is Someone who is friends. It doesn't have to be romantic as what you know, because not everybody wants a romantic relationship, but for friendships, even like chosen family. There are people who will support you and there are people who will love you down regardless of what you deal with who will clean your wounds. I've had these. conversations with friends and I've cried with my friends because of how caring their partners are, are how caring their family is, how caring their friends are, you know, so there are individuals who are like that. It might take time. Once you like weed out the people who are not for you to like develop those relationships, but the journey is worth it. And it may be lonely at first, you know what I mean? So I'm not trying to say like, Oh, you're going to feel so much better. You are probably going to feel very bad. Like, you know what I mean? It happens because you're going through grief, you know, of, what you're dealing with, with your body what it's doing to your personal life, it affecting your quality of life, all of those different things, all that grief is going to overwhelm you. But that's why it's important to get therapists. That's why it's important to just trust the process and trust the journey, no matter how difficult it gets. And that I can be complicated, you know, so I'm not saying that to be passive or flippant. I'm just saying that to provide hope that I was in the worst space of my life, you know, emotionally, physically, mentally, spiritually. And now I'm in the best place I could possibly be. And that's because I trusted myself. I trusted the process and I didn't give up. It feels like sometimes we want to lay down and if you feel like you need to lay down for a little bit, do that. Going on a journey with HS is about taking breaks, so if you're an advocate, and you're just like, I don't want to talk about this anymore. Take a break from talking about it. If you. Are having issues with treatments and things like that. See if your physician will support you and taking a break from doing treatment for a little bit so that you can just regroup, do what is right for you so that you can feel at peace and at one with your experience and with your body, but it will take time and it's worth the journey.
Ashley:I really appreciate the fact that you are so open with this, so that if there is somebody who's maybe on the beginning of their journey, or like you said, struggling with it, that they don't have to feel so isolated. Because I think the thing with HS would really feel like, because it isn't necessarily something that a lot of people would suffer from, that you would kind of feel like it's just you and that you are by yourself. And I also think the fantastic thing about being in the era that we are in. Like you said, there's 600 million eyes on this, on social media, that you can go on Instagram, that you can go on TikTok. Maybe your individual people that are going to get you and support you, maybe they're not necessarily at your office or in your school or in your immediate family, that maybe it is sort of searching out and finding that community that way that'll make you feel seen, make you feel heard, and know that There's nothing actually wrong with you as a human just because you have this condition.
Jasmine:Yeah. And, you know, social media gets a lot of flack and there are negatives to social media, but the positives you know, the reason why it boomed when it did Facebook is because of the connection that people made, you know what I mean? The connection for meeting with people all across the world, I've met people from India who have DM me and said, said, your content has helped me. Can you help me even more? Like, you know what I mean? It's I've gotten so many different individuals from across the world. And the same thing can happen to anybody who is living with this condition and is present online. And some people, you know, you can, you can even create a profile and not post anything and just follow people so that you can get information. You don't have to share your experience. You don't have to be public on social media and post. things, you know, you're not required to do any of those things to be a part of the community. So don't be afraid to connect with people online because those could become some of your closest friends.
Ashley:I love that. And I do agree. You don't have to be bold and out there, but I do love the fact that this is becoming a more mainstream topic and that I think a lot of people have HS and don't necessarily know that that's what it is. So I do like that. It's helping people feel like they don't have to suffer in silence and that they can be brave enough to know what to ask at the dermatologist or know what to ask to the doctor or have resources available for that.
Jasmine:Yeah, absolutely.
Ashley:If anybody is looking for you online, can you let them know where they can find you?
Jasmine:Yeah, absolutely. So I have platforms on TikTok and also Instagram and Facebook, and it's who is Ivana on all platforms. I believe on TikTok is actually, who is Ivana Espy, because I think who is Ivana was taken. So it's W. H. O. I. S. I. V. A. N. N. A. And then on TikTok, it's all of that, but also adding E, S's and Sam, P's and Paul Y. So Espy
Ashley:Thank you so much for having this conversation with me today.
Jasmine:Of course. Thank you so much for being open to spreading awareness. Like, you know, I'm sure there's somebody who listens to your podcast who might be dealing with HS. So I'm very grateful to be in this position. Thank you.
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