Shining A Light On HS (Hidradenitis Suppurativa)

Dr. Shannon C. Trotter and guest Dr. Fabrizio Galimberti together tackle the misconceptions surrounding hidradenitis suppurativa (HS), often mistaken for poor hygiene, by clarifying its true nature as an inflammatory disorder. Dr.  Galimberti shares the early signs and symptoms that can steer you toward a timely diagnosis, potentially transforming a person affected by HS. This episode promises to equip you with the knowledge to identify HS, understand its genetic factors, and dispel the stigma associated with it.

With a focus on the impact of HS on quality of life, this episode champions a comprehensive approach to care, advocating for patient empowerment through support groups and resources. Tune in for some Skin Sanity.

Transcript

Understanding Hidradenitis Suppurativa (HS)

Speaker 1 0:00

Welcome to Dermot Trotter Don't Swear About Skin Care where host Dr Shannon C Trotter, a board-certified dermatologist, sits down with fellow dermatologists and skin care experts to separate fact from fiction and simplify skin care. Let's get started.

Speaker 2 0:19

Welcome to the Dermot Trotter Don't Swear About Skin Care podcast. Today we're going to talk about something that many of you may not have heard about, a topic called hidronidsepartiva. You may even be walking around and not even know that you have it. So hopefully, by the end of today you'll learn more about this and also, if you think you might have it, you might be able to make your way into your doctor's office or dermatology office to get checked out, because we have treatments now that can really help with this condition. On the podcast today I have Dr Fabrizio Gallimberti. He completed his medical degree at the Cleveland Clinic Lerner College of Medicine and his dermatology residency training at the University of Miami. He also has a PhD in experimental molecular medicine from Dartmouth College. He's particularly interested in HS, or hidronitis separativa, and he practices in Myrtle Beach, south Carolina. So thank you so much for coming on the podcast today, dr Gallen-Burdy.

Speaker 3 1:12

Well, thank you for having me Absolutely excited to talk to you about hidronitis separativa, or HS. That's how we're going to refer to today, just for simplicity.

Speaker 2 1:20

It makes it easier. Sometimes we name things, and it's almost to a fault, because it makes it difficult for people to really understand what the heck are we even talking about. So when we talk about hidrogyneitis separtiva, or HS as we're going to refer to it today, what is it exactly?

Speaker 3 1:36

So HS is an inflammatory condition, and a friend of mine really put it in a good perspective. It's the least talked about of the somewhat common conditions, maybe because of the name or maybe because of where it happens. Right, it tends to happen in the underarms, in the groin, so in covered areas, in very, very personal areas where maybe we don't share with our friends, with our families even, and it's a type of inflammation, it's a profound inflammation that you see on the skin, but it's inflammation that starts within the body and sometimes it comes with a little stigma or a little thought process that is not correct, which is the fact that, given the locations where it happens, it might be associated with poor hygiene. It may be associated with the fact that you don't clean the area well or that you have some practices down there that are not safe. However, it has nothing to do with that. It's just a type of inflammation and, as such, it should be controlled as an inflammatory condition, not an infectious condition.

Speaker 2 2:37

That's really important, what you highlight, because we do see HS in those private areas the body folds the neck, the groin, the armpit area around the buttocks I mean even the creases behind the leg or the neck to you know, essentially where you got a body fold. This can happen and you're really right. I think patients think, oh, I just get chronic boils, that's all I've got, I'm just a boil grower. Or, you're right, people get scared and think you know, it's really just me, maybe not cleaning well enough, or maybe it's just an embarrassing area. How would you, you know, talk a patient through, especially if somebody's listening today and say, how do I know if I have HS? What would be some of the telltale signs that you'd say, hey, you should probably get checked out.

Speaker 3 3:15

So I think that one of the common terms used for HS is boils or cysts. If you have a cyst which is very possible, tend to be one and then it goes away, maybe you cut it out. It never comes back. But if you have a recurrent one, particularly if you're a lady and you see a trend with your menstrual cycle, most likely that's HS, poraginitis superativa and it's important to know that it's commonly commonly underdiagnosed. That means that maybe you don't think of it, or misdiagnosed, maybe you think it's something else. So a lot of these patients have struggled with HS for a long time and they would be diagnosed with boils, cysts and things like that, whereas they have an inflammatory condition that cannot be treated simply as a boil or as a cyst. So usually if you see these recurrent wounds, kind of nodules, ulcerations, sometimes they smell a little bit, sometimes they flare, so you're in a lot of pain there's a very good chance that you have HS. You just never heard that term, unlike eczema or unlike psoriasis.

Speaker 2 4:17

Sometimes a patient will come in and say you know, I think my mom and dad had similar spots, or they were just. You know someone who got boils easily too. So often I think patients wonder you know, does HS run in families? What do you tell them about? Maybe the genetic predisposition or sort of if HS can technically be inherited? If you will?

Speaker 3 4:38

So it is not a genetic condition, doesn't mean that if your parents must have it, if you have it, but at the same time it does to run into in families, kind of like rheumatoid arthritis. If your grandma had a lot of rheumatoid arthritis, you might have some rheumatoid arthritis down the line. However, at this point we don't really know what causes it a hundred percent. So it's difficult to prevent, right? So it does run into families. But interestingly, if you think about where it's located in private areas that's not something that you're going to talk about at the dinner table, right? So a lot of patients have a family history of that. They just don't know that they have it. So, of course, if you know that your family has it, I want you to be on the lookout, I want you to think about it. But just because you don't know if your family has it, just think about where it is. It's not something that you might necessarily know about it.

Speaker 2 5:28

That's a really good point because you're right, not exactly you know Thanksgiving conversation that you talk about spots. You're getting in your groin and share it with your mom and dad, or have mom and dad or grandma share it with you as well. So really good point to highlight there. You might even know that it's been in your family. You wouldn't even know that and so you know. When you think about other factors and a lot of people wonder well, what puts me at risk for developing HS? What things do you talk about with patients and what do you recommend that they change, if anything with risk factors that they can go after?

Speaker 3 5:57

Well, as I said, we don't really know a hundred percent what causes HS. However, we know that there's a lot of components that we can try to modify. For example, smoking. We know that smoking doesn't help many things in medicine and HS is one of those. Right, smoking does give you some sort of inflammation inside your body. You're just building on top of that inflammation. Additionally, diet we live in a time where there's so many difficult diets that we could follow. But the American Academy of Dermatology, for example, has a patient page for diets suggested for HS. And when I say diet, it doesn't mean that you have to eat very little food. It just tells you what kind of food you may like.

Speaker 3 6:37

Additionally, we do know that being overweight certainly doesn't help the HS. Think about where it's located. Maybe there is a little bit of friction that contributes to that inflammation or any type of inflammation that comes with extra weight. So there's a lot of little things that we can do. Now, nobody's perfect, so we cannot really do all those little things to prevent HS. But if we suspect that we have HS, we can act upon. But if we have moderate to severe HS something that is very significant I do think that we need to talk to a dermatologist to medically treat it, and then we're going to do something at home to also help those medications work even better.

Speaker 2 7:16

That's really good to know that people have things they can change, but they're also hard things you know to change too. I mean, if somebody smokes or is looking to lose weight, those are definitely the tough things to change, and we're going to talk more about treatment, so it's good to know that you can partner that with treatments that are becoming more effective to control HS. If you think about, though, when a patient comes in and they talk you know about oh, I was reading that I might have HS and there's different stages that you might use to sort of describe what kind of HS or how severe my HS is what are those different stages and how do you use them in your office to help patients?

Speaker 3 7:50

So we always like to divide diseases or stage this into stages stage one, stage two, stage three. And for HS, lucky enough, the stages are called HS1, hs2 and HS3. That's after the early staging. But we don't need to know the name. What we want to think about it is mild, moderate or severe, and in a patient in many occasions know if they're mild, moderate or severe.

Speaker 3 8:13

Most importantly, I want to differentiate this stage because scarring is a big part of HS. Sure, there's going to be pain. It's a painful condition. There might be discharge, there might smell a little and that's for the now. But the more scars you have, the higher stage you have, the more these nodules will get connected with themselves. That's called tunneling, like a tunnel that unites two cities. They unite different nodules and we really want to prevent you, as a patient, moving from a low stage to a higher stage, because those higher stages are, of course, more difficult to control, but they left behind a lot of scarring and it's difficult to address scarring. Think about it in a sense like acne. Of course is not acne, but a few years ago, when we didn't have the term HS or we didn't use the term HS, we used to call it acne inversa and it gives you an idea that it might look like acne, but it happens in different location and, just like acne, if you get a scar, the scar will stay.

Speaker 2 9:12

So you know, scarring you mentioned and kind of the collection of different spots to kind of help understand if somebody is mild, moderate or severe. And I think you're right, patients can come in and just tell you. And I think, what's exciting, studied and really evaluated more thoroughly beyond, I think back in the day people thought, oh, you know, there were antibiotics and some topicals and surgery used to be the mainstay where I think we really shifted to understand that this is really more appropriately managed medically because of that chronic inflammatory state that HS really is. Can you touch upon, kind of you know, the spectrum of treatment options that patients have and kind of where you think they might be most appropriate? So I think a lot of people want to know OK, I've got it, You've diagnosed me with it, but what's going to happen and what can we do to really treat it?

Speaker 3 10:07

So we finally recently entered the time where we can really do some good work when it comes to HS, because now we have medications designed for HS. Many of those come from the psoriasis field. Of course, hs is different from psoriasis, but they're both inflammatory condition that they have some overlap. Of course, if you're mild, we're going to treat you from the outside. Maybe we're just going to use some topical antibiotics, maybe we will inject some of the most painful lesions with steroids to cool them down. But at the same time, we want to prevent you from having a flare because of the pain, because of the way that it makes you feel, and I'm not going to talk a lot about it, but just think about the fact that you have these lesions in personal, very personal spots that might affect how you look at yourself or you might interact with your loved one. So there's a lot of that lifestyle and quality of life that comes with HS and we want to keep that in mind. For my patients with mild to moderate and already close to the moderate, I do like to start oral medications. That means something you take by mouth, of course. Now they're very safe in general. We can think of antibiotics. We can think of things to normalize your hormones, or even medications that usually we think about it for diabetes. This is not diabetes, but remember we might have an association with high sugars, overweight. So for the right patient, we might even think about that. The most exciting time is really for the patient with moderate to severe. We know that they have a difficult HS, we know that they have a scarring HS and now we can start on medication specifically for them, and usually I'm thinking about something called a biologic that you might have heard about it before. These are going to be injections. They don't interact with other medications and they're not every day, so they're not everyday injections. So if you're like me and you're scared of injections, at least it's not every day, and we have two that are approved by the FDA. But over the next couple of weeks or months, I think a third player will come onto the field and I think that third player is going to be important to have.

Speaker 3 12:01

Now I'm going to give you a couple of names just for you to know. So, as a patient, you might have those names in the back of your mind Humira, cosentix and in the near future, maybe something called BimSlex. These are all medications that you might have heard about it because of psoriasis, and now we're slowly importing them to the field of HS and they work very well. But I want you to think, as a patient with HS, that the best time to start them is when we have minimal to no scarring, not after all the scarring has happened. So we have a little bit of window of opportunity where we can prevent the disease from getting bad and we can prevent the disease from leaving a long-term memory.

Speaker 3 12:41

Now, down the line, just a few years down the line, we might have pills, just a pill right Specifically for HS. Once again, a pill that may be already used in dermatology or maybe in other inflammatory conditions, but those are not quite ready yet. So I want you to think about injections for now. But the field of HS is changing and in just a couple of months, if not years, we're going to have even better medication than what we have right now. But for the first time in many years, we can tell that we finally have good medications for HS.

Speaker 2 13:15

For somebody that's maybe struggled with it for years and hasn't had an opportunity to be on some of these newer medications and maybe they've done surgery. Only where do you feel like surgery still plays a role, or maybe a new technique not maybe full surgery, but the concept of de-roofing that people are doing as well to help HS patients?

Managing Hidradenitis Suppurativa and Well-Being

Speaker 3 13:34

And I think it's great that you bring up that point, because HS is a very complicated disease. I mentioned to you that we don't know what causes it and I mentioned to you there's a lot of little things that you can do to try to make it better. It gives an idea that there's a lot of players here that come together to bring the HS to make it worse. Surgery, de-roofing all play a role and I think they should be used in conjunction without a medical treatment. In my clinic, I do like the idea of de-roofing, I do like the idea of surgery, but at the same time, I use that in combination and typically for the most bothersome lesion, I use it in combination without a medical treatment.

Speaker 3 14:11

The way that I like to bring it up to my patient is that those injections, those treatment. The way that I like to bring it up to my patient is that those injections, those injections, are like the cake, the pie, whereas the cherry. The cherry is going to be the injection, the surgery. It's going to make it. It's going to make it nicer, it might even make the scar better, but that's not really what we want. We want something on top of that. Now, every patient is going to be different. Let's say that you have one very annoying HS lesion, just one. Well, maybe you're an excellent patient for the roofing or surgery, but for the vast majority of patients you tend to have a lot of lesions. So I don't want you to think about a medical condition. The surgery can make even better. But we kind of want to use multiple approaches to really cool it down.

Speaker 2 14:53

And kind of along those lines too. I feel like you know just the public and people in general. They're really looking for what they might call natural or alternative therapies to help assist in treating whatever they've got going on, whether it's skin related or something else. Are there any supplements, nutraceuticals or other things that you think have some value, some data behind them that you actually recommend to your patients to try in the treatment of their HS?

Speaker 3 15:16

you some data behind them that you actually recommend to your patients to try in the treatment of their HS. So there are quite a few. Now the data is not as strong and I don't think they're necessarily a substitute, but patients can start it before they see a physician, right? Because they're over-the-counter, that means, in general, they're quite safe. I still want to invite you, as a patient, to educate yourself and to drive your care. As a physician, I see myself who gives you the tools, but I still want you to be very involved.

Speaker 3 15:39

So, for example, we know that vitamin D plays a role in inflammatory skin conditions. A lot of people in the US are low in vitamin D. Vitamin D supplements are safe. They're over the counter. You can even talk about it with your primary care physician before you see a dermatologist. And consider that Zinc has also been used in the past to help with HS, or something called N-acetylcysteine, which tends to lower inflammation Once again, safe, once again over the counter. And all those little tools are there to really make sure that the patients with mild HS really don't become severe moderate to severe, don't get the scarring, and they should be using conjunction with a visit with a dermatologist to really establish a diagnosis and to make sure that we don't need any other medical treatment.

Speaker 3 16:28

Now, the last one that I want to mention to you because to me it's very important, it's the fact that perhaps probiotics or prebiotics may help normalize your gut. Now, inside our body we have a lot of bacteria. That's normal, right? That's actually how we're part of being humans. Our skin is covered with bacteria, our guts is full of bacteria, and those are good bacteria. But sometimes they get a little bit out of whack. Some of the annoying bacteria get higher than the other ones and we get inflammation in our body. And using a probiotic or a prebiotic can help normalize that gut microbiome or bacteria there, and we know that there is a strong connection between the gut and the skin when it comes to the microbiome. We know that in HS and we also know with a condition associated with HS, which is inflammatory bowel disease or IBD, crohn or ulcerative colitis. So I want to invite you to think of all these over-the-counters, because they're safe and they can make a difference, especially for the mild patients.

Speaker 2 17:33

I think that's great information because, you're right, people have access to this already and it may not be the only treatment, but what a great thing to add in that may only help, you know, get their HS even better controlled for them. And lastly, in the couple of minutes we have, I wanted to focus this is really important, saving it for last. So to kind of end on is the impact, as you mentioned earlier, hs on quality of life. How do you counsel patients? Because you know, with a condition like HS, it's not unusual for patients to feel down or depressed. Or, as you mentioned, because these lesions might be in the groin area, the vaginal area, the buttocks, you know where they affect intimacy, you know for people, how do you counsel them regarding the toll it takes on their mental health and do you recommend that they potentially see somebody or get help to manage that aspect of their care?

Speaker 3 18:18

Well, number one I think it's very important to tell my patient and to have the patient understand that this is not contagious. There's a lot of concerns about those areas having something contagious. Hs is absolutely not contagious, okay, but given the location, given the pain, given the smell, a lot of depression tends to come along with HS and, interestingly enough, depression doesn't necessarily have to do with how mild, moderate or severe you might be. That's how you feel about it and you're free to feel how you want to about it. So you might have just a little bit of HS, but for you that's a lot and I want you to share, as a patient, that feeling with your doctor so the doctor can think best what it might be the best course of action for you.

Speaker 3 19:00

I do think that it's important to at least consider looking out for patient support groups and luckily HS is a phenomenal one called the HS Foundation, which will give you little tools and you can meet online perhaps other patients who can share the story to help you really understand what the other people went through, because it might be very similar to what you are going through as a patient with HS, and knowing that other people are there can make you feel better.

Speaker 3 19:28

Number one. But number two can also give you some coping mechanism, and I'm not talking about necessarily medications, maybe cognitive behavioral therapy or little things for you to do at home, with or without a specialist, to help you really understand your HS and to help you cope and understand how to live with your chronic condition. Now, I say chronic condition, I'm saying that there are great treatments, but I also want to emphasize at this point that we don't really have a cure for HS. We want to make your HS part of the past, but I'm talking mostly about treatments rather than cure, and I don't expect them to make your severe HS become part of the past in just a month. It's going to be a long path and your dermatologist will be there for the long path, but we have only certain medications available and it will take time to get there.

Speaker 2 20:17

Well, I think you've given people hope, though, that we're going to get there. You know, with what's on the horizon, what we have available and hopefully, for your listeners out there, you really have an idea, better understanding of maybe what HS or at least it's prompted you to maybe think, hmm, maybe I do have it and at least get in and get checked out. You know, because, as dermatologists, this is one disease state we really want to help patients understand, and now we have tools to really help you out there, if you have it as well. So, dr Gallen-Berdy, I really want to thank you for coming on. That was a great overview of HS. I think we're definitely going to help some folks out there. So thank you so much for your time today.

Speaker 3 20:48

It was a pleasure. Thank you for having me.

Speaker 2 20:50

Of course. And then you want to give everyone the name of your practice. I know you're not involved in social media much, but they want to find you online. What's the name of your practice and where they can find you?

Speaker 3 20:58

We are part of the Conway Medical Center in Conway and Myrtle Beach, south Carolina CMC. We're looking forward to seeing you if you need us.

Speaker 2 21:06

Thank you again.

Speaker 1 21:06

That was great and please look forward to the next episode of Dermot Trotter. Don't Swear About Skin Care. Thanks for listening to Dermot Trotter. For more about skincare, visit DermotTrottercom. Don't forget to subscribe, leave a review and share this podcast with anyone who needs a little skincare sanity. Until next time, stay skin smart.