HS Explained: Your Questions, A Dermatologists Answers

HS isn’t “just boils.” It’s a chronic autoinflammatory disease that often begins in the teens or 20s and affects sensitive areas of the body. We sit down with double board-certified dermatologist and Mohs surgeon Dr. Harrison Wen to explain what HS is, why it’s frequently misdiagnosed, and how recognizing it early can change the course of the disease.

We break down the immune and hormonal drivers behind HS, what progression looks like, and where treatments like biologics fit into care. From medical therapy to lifestyle strategies that support long-term management, this episode offers practical guidance for reducing flares, preventing scarring, and protecting quality of life.

Transcript

Setting The Stage On HS

SPEAKER_00 0:00

Welcome to the Dermotrotter Don't Swear About Skin Care podcast. On today's show, I've got Dr. Harrison Wen. He's a board certified dermatologist, but double board certified in dermatology as well as MOS micrographic surgery. And he runs Harrison Dermatology in the Houston area. We're going to talk about HS today, one thing he's passionate about and treats patients very well with. Welcome to the podcast, Harrison. It's great to have you here.

SPEAKER_01 0:23

Shannon, thanks so much for having me on. Looking forward to talking about hydrogenitis operativa.

SPEAKER_00 0:27

Yes. So I think this is something, you know, I even said HS, and some people might be thinking, well, what are you even talking about here? So I'm glad you kind of spelled that out for people on Hydrainitis separativa, because it's something that, you know, I've become passionate about. We run clinical trials in our office. We manage a lot of patients with this debilitating condition. And we're going to take unique angle today. So Harris and I decided to get some questions from the patient perspective to really answer those for you so that you have an idea if you have HS, or you have a friend or family member does sort of, you know, what they're going through and really dispel some myths and spell things out for patients as well. So I wanted to get started with kind of, you know, patients always with HS want to know, like, why did I get it, you know, in my younger years? Some people say I'm in my 20s, I'm in the prime of my life. Why am I getting HS now?

What HS Is And Isn’t

SPEAKER_01 1:13

Yeah, thanks, Shannon. First, whenever I have a patient with HS that comes in my clinic, it doesn't matter if it's the first time uh they've received a diagnosis or they've received a diagnosis for many years and are coming to me for a second, third, fourth opinion. It's really important that I make sure that we're all on the same page. So I start with explaining what HS is and what it's not. What HS is, it's a chronic, auto inflammatory, progressive condition. And we break that down. Chronic, meaning we don't have a cure, autoinflammatory, meaning that we have inflammation going on within the body, and it's progressive, meaning that if we don't appropriately control the inflamm the appropriately control the inflammation, it will progress. But it's also important to educate our patients on what it's not. It's not an infection, it's not contagious, and it's not your fault. I want to make sure that that's very clear. We will talk about things that are maybe modifiable in one's lifestyle that can be helpful, uh, but really important to shift the blame away from patients. Now, to answer a question, why does this start in my 20s? Oftentimes, not always, but often starts in teenage years or to the 20s because it begins during or after puberty, because it's it's influenced by hormones in the immune system. And your teenage years and your 20s are a time when your oil glands, your hair follicles, and your hormonal signaling, they're very active. And so uh again, it just is not caused by poor hygiene. It's a disease of inflammation that starts deep in the hair follicle. And for many people, that's really what happens and uh it shows up in early adulthood when some of those uh biologic systems are starting to peak and change in their activity.

Why Diagnosis Takes Years

SPEAKER_00 2:52

Yeah, so it's good for them to understand that's not really coincidence, right? There's a lot of those physiologic changes you talked about that make HS, the thing that pops up during that point in life. But I want to reiterate what you talked about, you know, sort of that feeling of shame or embarrassment that a lot of HS patients have, and you know, really pointing out the fact that this isn't their fault. There's nothing that they can do necessarily about this to a degree. There are some things that I will talk about that might help it, that they might be able to change lifestyle-wise, but really giving people, you know, that comfort, you know, to come in and talk about it, because it can be tough, because it affects areas that are definitely very sensitive, you know, for people. So I'd like that you bring that up because it is one of the things I think that is a barrier for patients to get diagnosed, which is one of the other questions. You know, a lot of you know, I'm looking through the list here and what's been submitted from patients here, you know, why did it take so long to diagnose my HS? And I think you and I know the answer here. And you know, awareness is part of the piece of the puzzle. I think is a bigger piece than sometimes we want to admit, but what do you say to your patients when they're wondering, why did it take so long?

Family Risk And Genetics

SPEAKER_01 3:53

Yeah, it well, the the average uh time to diagnosis uh in 2025, 2026 is around seven years. And it's gone down from about 15 years, just about a decade ago. So in 2015, 2016, the average delay to diagnosis uh is was 15 years, and we're about half that right now. We're still about seven years too long, in my opinion. Uh, but why that's happening is that it's uh this it's it's multifactorial. Uh first, HS is often mistaken for recurrent boils or infections, and so uh patients will present to the ER or maybe to other um specialties that aren't as you know familiar with HS, and so uh they they don't receive the appropriate and the they the uh maybe the prior uh clinicians just see what what what is in front of them and they see it as a cyst or a boil and they are don't see the greater picture. The other factors that may um that that that you know that may affect it is that sometimes patients are embarrassed uh about their disease and the areas that it's affecting. Remember, as just as you mentioned, Shannon, it's often affects areas that are sensitive. Um, you know, it can affect uh uh underneath the breasts, but also the genitalia. Um and so these are areas that um uh patients they're embarrassed to talk about. And when they receive uh when they first start having symptoms early on in their, let's say their teenage years or their 20s, they don't want to talk to their parents about it because they're afraid to talk about sensitive areas uh to their parents or to their loved ones. And so um again, it's kind of coming from both sides. We're getting better, we're building awareness uh among uh the entire house of medicine. Uh we're educating our medical students, educating our residents, educating our colleagues about HS. Um, but we're also building awareness um, you know, on a public level. Uh social media has gone a long way in helping this. Things like um uh uh, you know, Instagram, Twitter, Reddit, things like even uh your podcast, Shannon, um, you know, being able to reach uh patients and uh you know notifying them about if you have these spots, don't be embarrassed. Feel empowered to speak up and find uh care um as soon as possible.

SPEAKER_00 6:06

Yeah, I like that you highlight that because I think taking the stigma away is part of you know one of our goals here with the podcast, but that piece too of educating our colleagues, because you're right, so many of us share in the care of HS patients because a lot of them might see their primary care doctor, they might go to the emergency room and see an emergency room physician, or they might actually go to their gynecologist or even a general surgeon. You know, there's so many facets of this disease of who's managing it that I think to create a better understanding and also kind of where we're headed in treatment for it, because we've made a lot of headway in treatment, although there's a lot more room, I know, for even more improvement on how we approach the HS patient with our therapies. It is an exciting time, you know, I think for those patients too, that we're finally giving it the recognition it deserves and putting it in the spotlight as well. You know, I had an HS patient that came in and asked me this question the other day. So I was gonna have you touch a little bit on like the genetics aspect. I know we talked a bit about the hormonal changes, autoimmune, but she said to me, hey, you know, my husband and I want to start a family. They're in their 30s, they've been married now for a few years, and she literally asked me, Will I pass this on to my children? So I want to get your thoughts on how you kind of handle that question because you know it's something that we do see at track in families, and I know it's a grade of concern for her because of how she suffered with HS for so long.

Progression Fears And Early Treatment

SPEAKER_01 7:24

Yeah, that's a great question, Shannon. Um, there is a genetic component to uh HS. We see about one-third uh to one half of patients with HS, they report a family history. Uh and what I see in my clinic, I do see that, you know, when I explain to patients what they're going through, that, you know, this is a uh chronic condition, they say, oh, I think my my mom or my aunt had it. And then conversely, sometimes we see uh patients um bring in their kids uh because uh they're able to detect it uh a little bit earlier. But that, you know, when when this comes up in my clinic, uh I try to I try to change it into an opportunity, saying, look, like yes, there is a higher risk that you may pass this on to your children. However, because you have awareness of this, this is something you have the opportunity to talk to your kids about, to really break down the barriers, take away the stigma. And then when they're really in their teenage years, let them know about your experience with HS so that if they do start to experience bumps or uh painful spots in the groin, underneath the armpits or underneath the breasts, that they notify you as soon as possible, that they feel empowered to notify you. Because again, if we intervene earlier, we have a much better chance of preventing progression uh as well as a better chance of our treatments from working. And so again, I try to frame it as a opportunity for uh our patients to really help uh change the trajectory of their kids if they do experience hydroiditis.

SPEAKER_00 8:56

I love that because I do think for you know, you know, when you start a family, you're already nervous, right? You know, everyone, you're gonna become a parent for the first time, you're like, oh gosh, I don't even know what I'm doing. And already she's thinking about like how would I handle it or you know, what's gonna happen if my child happens to have HS as well. But I I love that approach of the empowerment, you know, to kind of put that, you know, back into her hands that you know what, you can really look for this. And like you mentioned, we do have therapies and things we can do to intervene earlier, which is something else I wanted to highlight because I feel like I get this question a lot too, is the progressive nature of HS. So one of the things I've seen for some of our HS patients that come in very early with this condition, they might be, you know, what we call like a early stage one and kind of on the precipice of maybe developing scarring and evolving to a stage two, or even for those with more advanced stage and three. I think that's one of those things that people forget about the progression. If you started early on, could we intervene early and prevent that progression from happening? And I'm amazed at some of my patients that they're kind of intimidated by that thought of, you know, progression and going on therapy. Then some are like, you know what, I don't know if I could take something lifelong. And it's been an obstacle for me. And this is one thing so the patient asks, you know, if I have HS for years, is it going to get worse? And I said, well, you know, the course can be unpredictable, right? Some people do have this more, you know, steep trajectory of progression. So people could be more gradual. There are some patients where it stays, you know, more stagnant, although we don't say that all the time. How do you sort of you know talk a patient through if somebody's listening, like, you know, I'm hesitant to go on therapy to prevent it from progressing, what would you say to them?

Stress, Triggers, And Lifestyle Levers

SPEAKER_01 10:29

Yeah, um, well, first I would say that um uh that uh two-thirds of patients with early stage disease will progress, right? So you mentioned hurly staging. There's pros and cons to hurly staging, but still a very common way to characterize uh HS. But hurly stage one is the earliest phase of HS. And when you have patients with hurly stage one, one-third of patients will stay in hurly stage one, and two-thirds will go on to progress from her stage. So that means they'll go on to hurly stage two and hurly stage three disease. So they're developing more scarring, more tunneling. Um, it's impossible for us to predict which patients are which. Uh, but that being said, I know I'm not a betting man, but if I were, if someone gave me two-thirds odds versus one-third's odds, I would um intervene and put my money on a one, uh, the outcome with a two-thirds odds, right? Um, and fortunately, uh, we do have options that are effective uh and safe for treating HS. And um uh, you know, we have uh currently three FDA-approved treatments, but we have we'll have more coming down the line. Um and the good news is the more as more time goes on, we have more and more options that are effective and safe that you can be on long term. And so um just remember, uh, this is what I would say to my patients, just remember that uh HS as it progresses, it can be tremendously impactful and can um, you know, it can it can have more risks and side effects if we don't intervene than if we intervene. And so just trying to encourage our patients to feel empowered that even though we don't have a cure, that we get them on the right treatment. And just again, emphasizing the chronic nature and something that patients understand is they tend to understand diabetes or high blood pressure. They probably have loved ones with both of those, and they are at high risk for those conditions themselves. Just in those way, just in the same way that those conditions are chronic, we don't have a cure for that. We have to start start off in long-term treatment. It's the same way with HS.

SPEAKER_00 12:31

Yeah, and I think that's a great approach too, because it's tough. I will tell you, you know, if you look at just generational differences and how people maybe approach healthcare or medications, you know, they've talked about Gen Z looking to be healthier, you know, they're not going to the bars, they're not drinking. They're talking about how it's hurting, you know, meeting people in the social scene and just how that's shifted sort of things for us as a society. It's interesting talking with a lot of them that that concept of having to intervene early and go on medication can be a little daunting or scary, which I get, especially when you're thinking of this being chronic and potentially lifelong. But I love the way you talk about being kind of a betting person because I think that can put that in perspective for them too and give them a little bit more confidence that maybe this could be the right decision for them and their therapy. Now, one of the other questions that I wanted to bring up, because we we haven't touched about maybe like what causes, you know, flares to kind of happen. But one of the questions a patient asks is, you know, what about stress, right? Stress is in everyone's life, you know, uh, we all experience stress, and they want to know, you know, does stress make HS worse? And if so, is there anything they can do about it?

SPEAKER_01 13:34

The answer is yes. Uh, stress can make a lot of things worse on the skin. Um, and stress it activates cortisol and inflammatory signaling pathways. And so whenever uh a patient experience is experiencing stress, especially chronic stress, it can lead to immune activation, systemic inflammation, and some pain sensitivity. And so HS can be worsened by stress. But that being said, I wouldn't just chalk it up only to stress, right? And in the same way we try to manage stress in general for the uh wellness and health of our patients. I wouldn't, I wouldn't delay treatment or be less aggressive because we're just chalking things up to stress. It's not just in our patient's head. There's still that inflammatory uh component that we need to address. And so we want to address that, but if we can, let's try to address the stress as well. And so the mind-skin connection, it's real. Um, but again, it's not the only thing that we need to address when it comes to HS.

GLP-1s As An Add-On

SPEAKER_00 14:39

Right. And it's kind of a vicious cycle, right? Because stress can make HS worse, and then HS can cause stress for a patient. So we see that with a lot of different skin conditions and how those two can be interrelated. But stress is one of the things we call, you know, a modifiable potential risk factor, you know, to make things worse. What other what other things, you know, if you're looking at, you know, if you're thinking about other things that make HS worse that you might be able to modify, like lifestyle type changes. I mean, stress is a harder one to kind of change up, but what other things do you recommend to your patients? Because that's one of the things people are asking here, like what else can I do lifestyle-wise, that might actually help my HS?

Biologics Now And What’s Next

SPEAKER_01 15:16

Right. Um, so there are a couple other modifiable risk factors. Um in uh, but I often don't emphasize this early on because I want, I don't want patients to feel like, again, it's their fault. Sometimes they've been told uh right away from other clinicians that, oh, if you just lost weight or you stop smoking, uh then this would go away. Now, do patients get better if they lose weight? Sometimes, answer is sometimes, not always, but sometimes. And do patients get better if they stop smoking and specifically nicotine? The answer is again sometimes, not always, but sometimes. And so that really gets at two modifiable risk factors. One is uh is weight, and to that point, diet. So let's talk a little bit about that. So uh diet can be helpful, uh, and so it's not always the same among patients. Some patients will get better, uh, others won't. And there's not a just a single diet that I can recommend uh uh across the board to my patients. Um unfortunately, it's something that they really kind of have to uh have to have to uh have to experiment themselves and uh see if they can tie to whether uh certain diets or certain foods trigger their disease. Uh but we know diet can influence inflammation, and so general recommendations, general broad strokes is I try to recommend my patients to reduce um intake of highly processed foods, reducing high sugar foods, higher glycemic foods can be helpful, reducing dairy can be helpful for some patients, and then also weight reduction if patients are overweight. And so uh something that I've added to my practice is a prescription uh and management of uh GLP1s for HS. Um and I try to uh introduce this concept uh at the right time to patients. Again, trying to de-emphasizing that this is the only thing that um that's gonna help them, or de-emphasizing that again, it's their fault because it's not. It's something that is only one piece of the puzzle that we can uh help modify. And that other one is reducing and trying to take away uh smoking nicotine because we knew we do know that nicotine uh smoking cigarettes chiefly, but also vape uh vaporizing vapes can uh can make HS worse. And if we are able to remove that uh from a lifestyle, it can improve uh HS as one factor.

SPEAKER_00 17:41

Yeah, I think it's interesting how you highlight that that for you know changing lifestyle, it's tough, right? It's probably one of the tougher things for us to do because we fall into habits or sometimes, you know, you know, to cope with the stress, somebody's like, I smoke. I had a patient tell me that. They say, You're telling me to reduce stress, but I smoked to reduce my stress, but now you're telling me I can't smoke, which is just gonna make me more stressed, you know. So they were joking with me that, you know, there was a lose-lose situation for them. But I think it's important, as you mentioned, that these are sort of, you know, the add-on things, you know, that you don't want patients to feel like you're accusing him of like, hey, you're creating this with all the things you're doing. But you're right, for some patients it can be really relevant. I have had patients with weight loss, they've had significant improvement, and other patients may be mild and moderate, right? So we don't, I think, fully understand the connection. I think each patient is unique and different. But GLP1s that you mentioned, another question here, like, hey, I've seen GLP ones, they can work potentially for psoriasis, seen it in the HS space. You know, when would a GLP1 be potentially right for me? So I was thinking you could maybe comment on some scenarios, maybe where you've added that into therapy or felt like it might have maybe a better role for maybe one patient over the other, or maybe you tend to use it in kind of more individual conversations.

Mental Health And Quality Of Life

SPEAKER_01 18:52

Yeah, uh I I rarely use GLP1s as monotherapy with HS. Um, it's typically as an add-on or adjunctive therapy in conjunction with another biological systemic uh for reducing the inflammation. But if I notice that patients are uh or are they are overweight or they're uh obese, I talk to them uh about introducing GLP1 uh as part of their treatment regimen. Uh and I try to prov to talk about that um uh not right away, uh, because again, trying to de-emphasize things that are their fault. And most most patients um I find they they that are overweight, they know they're overweight. They've tried to they try to do things that um uh try to to uh address that and they struggled um you know in um in their previous efforts. And so I introduce a GLP1 again as a uh as an additional uh option, something that can help them in their journey to lose weight. Um I don't promise that it's going to um help their HS because sometimes uh patients will lose weight on a GLP1 and it doesn't help uh their HS, but overall it does help them uh, you know, by losing weight. So I think, you know, if we can introduce that to the right patient at the right time, um, it can be um uh very impactful.

SPEAKER_00 20:17

Yeah, I'm excited where the research will go with this because I I think you know, as we're looking into this for other skin conditions like psoriasis as well, and there's clinical trials underway. I I think it has potential to revolutionize some of the dermatologic conditions we treat for inflammation, is at the heart of the pathophysiology. So I'm excited to see where it goes for HS into the future. But right now we do have, you know, a few medications that are proven on the market for HS. So I was gonna have you touch on that to be able to say, what are biologics and when are they appropriate? Like when would I actually take one for my HS? So it's gonna have you just comment a little bit on what's out there and you know, when do you talk about starting one for a patient?

SPEAKER_01 20:56

Yeah. So biologics are their targeted immune therapies. Uh so they block specific inflammatory pathways. Uh and and uh in HS, we have three, we currently have three FDA-approved medications. Uh the first one is uh adalimumab. It was historically known as HUMERA, um, but because now it's uh um it is the patent is has expired, you you know, it's available in a biosimilar resogeneric. That was the first uh treatment that came to market. Uh what's kind of differentiates it is it's available for our teenage patients, um, and it can be helpful for patients with other comorbidities like inflammatory bowel disease, which we see uh often in conjunction with HS. Now, the second treatment to come to market, uh, and by the way, humera or adolumimab is a TNF alpha inhibitor. Uh the second one to come to market is called Cosentix or Secukinimab. That's an IL17A inhibitor, um, and that's approved for ATNO. And then the third one is called Bimzalix or Bimicizumab. That's an IL-17A and F inhibitor, again, approved for our patients who are 18 years old and up. The next one coming down the line, although it's not available, we expect to be a medication called PorvoSitnib. And then likely after that, we'll have one called UPAD Sidnib or also known as Rinvoke on label for HS. That's my prediction. That's not on behalf of anyone else. But we are getting more and more options by the year. And finding the right treatment for our patients is important. And when it comes to biologics, I often recommend early intervention. So if patients have a tunnel, for me, I typically start them on a biologic because of that already sh demonstrating progression. And even if they have don't have a tunnel, but they have uh uh impactful disease, it's impacting their quality of life, having a flare too often or drainage or pain, then I will start a patient on a biologic at that point in time. And remember, biologic is uh one piece of the puzzle. It's rarely for me the only treatment on board. We have to add on things that address a hormone, patient's hormones. We have to uh often add on things that uh that um address micro microbial and uh um microbial dysbiosis, not an infection, but dysbiosis of the microbiome. Um and then we also have to add on different surgical options. And so it's just one piece of the puzzle, but early intervention with biologics or systemics can be very helpful for uh for preventing progression.

SPEAKER_00 23:39

And I think that gives people some hope, like you said, the fact that we have these medications available, we have a few more that'll probably be soon to be available. And a lot of research has gone into HS. And the one thing to highlight too is that there isn't a one-size-fit-all, like you mentioned. You know, I think we find that there's some herogeneity. I mean, everyone's immune system is a little different and dynamic. And so sometimes one drug that works for one patient doesn't work so well for the other. So it's great to have these options that are coming to the table so that we can really prevent progression and rein in current disease for our patients. Now, last I want to finish it up because I think this is a really big thing to highlight with HS. If a patient wrote in and asked, you know, is HS linked to depression? I've suffered with depression all my life, but I feel like obviously HS has made it worse. But I've heard that HS patients can actually have increased rates of depression compared to people who don't have HS. So I wanted to comment on the mental health aspect. You know, it's probably one of, if not the most important thing that we actually deal with with HS. Yes, we're focused on treating the disease state itself, but obviously mental health is a big concern for us as dermatologists.

SPEAKER_01 24:43

Yeah, Shannon, that's incredibly important. And HS is associated with higher rates of depression, anxiety, social isolation. But super important to that, the patients out there who who are experiencing this, and that one that wrote in, it's not weakness. It's not because it's not because it's your fault. The depression is a result of multiple things. It's a result of chronic pain, it's a result of drainage and odor and scarring, systemic inflammation that can also happen, have an impact uh on the brain. And then, of course, it can have uh it can be a result of feeling misunderstood. And so, mental health care, super important part of uh treating uh HS. And so we encourage all our patients out there with HS. If you are experiencing depression, anxiety, social isolation, make sure you verbalize that to your dermatologist.

Closing Thoughts And Encouragement

SPEAKER_00 25:34

Yeah, and I think too, we have a duty too to kind of investigate a little further and ask patients because you're right, they might, as much as they're embarrassed about the HS, sometimes people don't want to bring up the fact that it's preventing them from, you know, dating or maybe, you know, applying for that job or, you know, just doing everyday functions. You know, I have a patient that had a hard time just raising her arms, you know, to put groceries away in her cupboards and you know how that impacts you. You know, we all take for granted some of those things we get to do every life, everyday life. And I think for some of our patients where they're just not able to do those, we have to sometimes sift that out and kind of you know, through all the noise of kind of the medical visit, you know, remember that mental health is still a part of the medical care we can give to patients. And as dermatologists, we can play a pivotal role in that. And if it's not something we manage directly, we can get them resources into the right place. Well, you know, Harrison, I gotta tell you, this has been great. I think patients are really gonna appreciate the insights that you've really brought up today and answering their questions. I know, like myself, you're passionate about treating HS. So I appreciate you sharing your expertise with our listeners.

SPEAKER_01 26:36

It's my pleasure. Thanks so much for having me on, Shannon.

SPEAKER_00 26:39

Of course. We'll have to do it again. And stay tuned for the next episode of Dermatrotter: Don't Swear About Skin Care.