152: Hidradenitis Suppurativa: An Integrative Approach w/ Dr. Hadar Lev-Tov

Hidradenitis Suppurativa (HS) is a condition that affects many people, but isn't well-known. I struggled with it for a while, initially mistaking it for some sort of cancer because of the painful lump in my armpit!

Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android

My guest today, Hadar Lev-Tov, MD, MAS, is an Assistant Professor, and the Director of the Wound Healing Fellowship Program at the University of Miami, Dr. Phillip Frost Department of Dermatology and Cutaneous Surgery, the Miller School of Medicine.

Dr. Lev-Tov completed his residency at Albert Einstein College of Medicine and obtained a Master degree in clinical research from the University of California, Davis.

His research interests include the treatment and prevention of chronic wounds, such as venous leg ulcers and diabetic foot ulcers as well as hidradenitis suppurativa.

Dr. Lev-Tov's work is supported in part by the Dermatology Foundation, NIH and industry. He is also the co-host of the popular Learnskin Podcast. He specifically enjoys bringing an integrative approach to each of his patients

Join us as we talk about Hidradenitis Suppurativa (HS), a painful skin condition that can be very difficult to treat, especially because it is not well-known in the medical community.

Do you successfully manage your HS? Let me know in the comments!

In this episode:

  • What is Hidradenitis Suppurative (HS)?
  • What causes HS?
  • Why does HS feel worse during exercise/sweating?
  • When to address it
  • How doe hormones affect HS?
  • Can nutrition help with Hidradenitis Suppurativa?

Quotes

“So maybe there's a genetic background. We know that it runs in certain families and it's been associated with some syndromes that we can actually pinpoint to a gene, but it's not everybody. So, we can't say everybody has a genetic part. And the other part that may play a role are hormones.” [5:06] 

“It's a disease that's easy to hide. So, the patients really suffer quietly. They hide it, they don't want to talk about it. It's very cruel disease, very cruel. And the suffering is just unbelievable.” [9:50]

Links

Find Dr. Lev-Tov online

Hidradenitis Suppurativa Foundation

Healthy Skin Show ep. 103: Hidradenitis Suppurativa: The Tip That Stopped My Flares

Jennifer's appearance on the LearnSkin Podcast: An Inside-Out Approach: The Role of Nutritionists and Nutrition in Healthy Skin

Diabetes.Org

Follow Dr. Lev-Tov on Instagram

152: Hidradenitis Suppurativa: An Integrative Approach w/ Dr. Hadar Lev-Tov FULL TRANSCRIPT

Jennifer: Hi everyone and welcome back. Today, I am very excited to introduce you to a new guest here at the Healthy Skin Show, his name is Dr. Hadar Lev-Tov. Dr. Lev-Tov is an assistant professor and the director of the Wound Healing Fellowship Program at the University of Miami, Dr. Phillip Frost Department of Dermatology and Cutaneous Surgery, the Miller School of Medicine. Dr. Lev-Tov-

Dr. Lev-Tov: That is a tongue twister, yes.

Jennifer: It is, it is. So, he completed his residency at Albert Einstein College of Medicine and obtained a master's degree in clinical research from the University of California Davis. Dr. Lev-Tov's research interests include the treatment and prevention of chronic wounds, such as venous leg ulcers and diabetic foot ulcers, as well as the thing I've talked to you guys about before, hidradenitis suppurativa, that thing that sounds like this Loch Ness monster coming out of a lake, but no it is a skin issue.

Dr. Lev-Tov: Yes, yes.

Jennifer: His work has been supported in part by the Dermatology Foundation, NIH and industry. Dr. Lev-Tov is also the cohost of the popular Learn Skin podcast, which I've been a guest on and he specifically enjoys bringing an integrative approach to each of his patients. Thank you so much for joining us.

Dr. Lev-Tov: Hey, thanks for having me, Jennifer, it's wonderful. And you're a fantastic guest though, and you're welcome anytime. And it does make me sound like an old professor on this thing, but I hope I'm not that old.

Jennifer: Well, you know what, I was really excited that we get to talk today about hidradenitis suppurativa, which I joked on the last podcast sounds like the Loch Ness monster. It's this weird phrase that sounds awful.

Dr. Lev-Tov: It does. Yeah, I like that. I heard all kinds of names. Yeah. It used to be called or in Europe it's still sometimes called acne inversa, suggesting that it may be relates to acne. And it has some overlap in some ways, but really all the names are bad. So now people just know it as HS, so we can just call it HS. Otherwise, we're going to spend an extra 20 minutes on the podcast.

Jennifer: Exactly. So for people who may not have heard my episode just … And I was not, to be clear in my episode talking about what it is as a diagnosis, for me, I was sharing my personal experience with it. But for those people who want to understand what exactly this is, and actually, I'm even curious, because I don't know all the physiology and everything. What is HS? What causes it?

Dr. Lev-Tov: So, if you want to think about HS, right now we don't fully understood. And by we, as the medical community fully understand the whole spectrum of the disease. We can't paint the full picture for what happens step-by-step, but we have developed, especially over the last few years, a lot of good understanding, and we have a lot of circumstantial, so to speak evidence to what's going on. HS is an inflammatory disease, so we don't think there's an infection part, but bacteria does play a role and I will get to that in a second. And it happens in the skin folds, so under the armpits, under the breast, in the groin, in the buttock area.

Dr. Lev-Tov: It usually presents with painful, draining bumps that sometimes start connecting themselves under the skin. One thing that I heard that I really liked is the image of an ant farm. So, if you think of a, if any of you had ant farms as kids, and you would look through the glass and you see these tunneling go through, that's what happens under the skin. So just close your eyes for a second and imagine people living with this, right, and this pain and these tunnels start draining because there's a lot of inflammation. So I've already told you a few factors there. I told you inflammation, I told you hair follicle, but it's not just the hair follicle itself. It's the whole unit.

Dr. Lev-Tov: So the hair follicle, it's not just the hair that you guys see coming out of your skin, but it's also a bunch of glands that are involved there. And all this together seems to be a target for inflammation. And then, we do think that some bacteria are involved, what is called the microbiome, and actually recently some really nice publications on this suggesting that the composition of the bacteria on the body that normally exists is out of balance. And so, when you get certain groups of bacteria growing more than they're supposed to, that may cause a reaction to that inflammation.

Dr. Lev-Tov: On top of that, there's other things that have been thought to play, one is genetics. So maybe there's a genetic background. We know that it runs in certain families and it's been associated with some syndromes that we can actually pinpoint to a gene, but it's not everybody. So, we can't say everybody has a genetic part. And the other part that may play a role are hormones. So we know, especially it's very easy to see in women because a lot of women with HS complained that it really gets bad around their periods.

Dr. Lev-Tov: So, these are all the components in there. And when I think about this and simply put to explain the process, most people are familiar with acne. You have a pimple that starts right around the hair follicle that's clogged. And usually you get a whitehead, it's going to pop out and dry out and you're done, right? What happens in HS in a way, in a way, and it's really a simplification of this, but the pimple instead of bursting out is actually getting swollen and big under the skin, inside and then burst inside. And then all that inflammation happens inside. And if you can imagine that inflammation and that opening in the skin allowing bacteria to come in and drive the inflammation even more and more. And it starts to really, that inflammatory process starts to really expand under the skin and create those tunnels. So, I think that's a way to think about acne that opens towards the inside.

Jennifer: So, can I just ask, so the tunneling is caused by the burst of the …

Dr. Lev-Tov: Right. So, well, what happens is you have inflammation in there and you can think of all kinds of inflammatory cells that come in. One of the things that inflammatory cells do for example is put out enzymes that know how to chew through all kinds of molecule, for example, collagen that we have in our body. So, they do that quite efficiently and maybe there's a part of that and how they allow themselves to borrow through the skin. But, I don't know that it's fully understood how that process happens. But if you think about having a few of these adjacent to one another, and that inflammation bursting in, it's very easy to see how, oh, well, if a dynamite exploded 100 feet from me and another dynamite, another 100 feet, you can see how a tunnel can happen like that.

Jennifer: I mean these, I don't even know what to call it. I mean, to me, it always felt like I had a gigantic marble under my armpit that every time I moved-

Dr. Lev-Tov: Yes. Yeah. And the term we-

Jennifer: Go ahead.

Dr. Lev-Tov: Yeah, the term we use is nodules, yeah.

Jennifer: Nodules, okay.

Dr. Lev-Tov: We can even call them nodules, yeah.

Jennifer: For official term everyone is nodules. I called it the gigantic marble underneath my armpit.

Dr. Lev-Tov: Exactly.

Jennifer: It was so painful to move my arms, I could not … And it actually felt, and correct me if I'm wrong here, but to me it felt like when I would exercise or I was in a state of sweating, so I was very hot. It would get worse. So sweating, made it worse. Do you find that that's the case [crosstalk 00:07:56]-

Dr. Lev-Tov: Yeah. Some patients strongly complain about that. It's funny that you mentioned it because recently I started adding some different medication that can help sweating. I mean, I work in Miami, so that's a big part of it, right? So, I wouldn't say that it's a known component of HS, but certainly a lot of people complain about it. And you can imagine some of the skin folds, so if you have something like you mentioned like this marble in your armpit and your exercise, right? And we mentioned that the sweat glands are involved in this, then you can imagine that maybe having too much sweat could be a problem. Not a known direction, but certainly an exacerbator that people talk about.

Dr. Lev-Tov: And you did bring up the issue of pain, which I think is very, very important to establish here because, a lot of people go with this underdiagnosed for years. I mean, the data suggests that people go without diagnosis for up to seven years and some [inaudible 00:08:53] up to 10 years. I mean, that's incredible. If somebody had cancer for seven years, and no doctor, even though they went to many doctors and they wouldn't tell them, I mean, that would be outrageous, we would never accept that. And that's part of the challenge that HS patients experience.

Dr. Lev-Tov: And I think it's very important for the general public to be aware, to understand that this is a condition that we think maybe is prevalent as psoriasis. I mean, it's unbelievable how many people have it. Yes. It's very hard to study the prevalence for two main reasons. One, it's a disease that nobody wants to talk about. So, if you think about various diseases, right? You think about psoriatic arthritis, right? You can think immediately about a commercial with a golf guy there, and if you think of psoriasis, right, you can think of Cyndi Lauper singing, right? But if you think of HS, there's no character, no celebrity wants to come out with that, right?

Jennifer: No.

Dr. Lev-Tov: Because it's a painful disease, right? And it happens in embarrassing area, right, in the groin area. And it's a disease that's easy to hide. So, the patients really suffer quietly. They hide it, they don't want to talk about it. It's very cruel disease, very cruel. And the suffering is just unbelievable. So they go to a doctor and doctors don't really know much about it, most doctors, because it's not part of their training. If you go to a well-trained dermatologists, they would know pretty easily what you're talking about. But, it's not a disease that's number one, two, three, or even 100 on the list of the stuff you learn in medical school. So, it's hard to know.

Dr. Lev-Tov: And so it's very much looks like just a random furuncle or some boil that is just infectious and it's hard to tell. So, it's hard for the doctor to diagnose. So it's hard to understand the extent of disease, but more and more as we learn, we think it's very, very prevalent. It exists in high numbers in the society. And we hope that by me doing this podcast and you talking about it and other people talking about it, more and more, we grow the awareness of this to give people the hope to go and the courage to go to talk to their doctors about it. And if you're going to choose a doctor, choose a dermatologist, because this is the specialty that's really been trained to handle this. The other thing … Yeah, go ahead.

Jennifer: Well, I was going add, so when the only reason that I went is because it was in my armpit, I became afraid of cancer. So, that was the reason that really drove me, because obviously I'm thinking, oh my gosh, do I have breast cancer? That was [crosstalk 00:11:23].

Dr. Lev-Tov: Yeah. Yeah, that's scary, right?

Jennifer: And at the time I knew no one else who had this, I was completely unfamiliar with what was going on. And so, I was prescribed an antibiotic and that was pretty much it. Actually the first time I had it, it went away and it did not reappear for about five years. And then, when it came back, it would not stop. It would come in waves almost every other month, and then it would get more frequent. So shorter periods between in this rest period, and I got to the point where I said, I can't be on all these antibiotics and I try different herbs. Some herbs seemed to help a little bit. I was not familiar with AIP, I'm in a Facebook group for HS. And it seems like some people are recommended to try the autoimmune paleo protocol and they have varying degrees of success.

Jennifer: Do you have any thoughts now? I mean, obviously my diagnosis was a number of years ago and I'm certain to some degree you must have a little bit more insight on what the different options are for treatment, especially because, and I will share this, thank God I did not have any tunneling. But, from my understanding and reading more about this, the worse this is, so the more it progresses, you may have to have surgery at a certain point. So, it is something to try to address sooner rather than later, I would say.

Dr. Lev-Tov: Yes, absolutely. So yeah, you bring up a lot of excellent points here and one is that it can be very scary, right? You have this lump in the armpit, you think, oh my God, I have a lymph node and it's scary about that. So, it is important if you have something in your skin, right under your skin, if you can get a chance to talk to a dermatologist, it's a good thing. The issue with tunneling and one of the major thing is scarring. Once the scarring happens, it's very hard to reverse that. And in fact, I got to say the only time I've seen HS really “resolved” is for young people who caught it relatively early in the armpits and undergone a surgery. And the surgery really is basically cutting out all this bad tissue and letting the skin heal.

Dr. Lev-Tov: I've seen people go for years after that without recurrence. And even if they have a little pimple here and there, it's not a big deal. So yes, in my mind, eventually, surgical interventions and the absence of prevention, surgical intervention will turn out to be probably the best definitive solution. Now, you're bringing a good point about diet. Now, we don't have, I want to put it out there, there's no one single diet that we know that can help treat HS. So I want to put it out there, but certainly because we mention inflammatory, so certain like the antiinflammatory diet that you mentioned, we do know that because remember I mentioned at the beginning, the hormonal component.

Dr. Lev-Tov: There is this sense, and it's based on again on circumstantial evidence that something called insulin growth factor, which is a part of the hormonal system, that part of the insulin response to taking in sugars in the body plays a role in HS. And we think that is because of a couple of things. One of the major thing is that we use the medication as an adjunct medication that helps to control that. And that is a medication called Metformin. It's a diabetes medication. Some people may know it as diabetes pill and it's actually relatively safe and we use it and we see some good response and we know that targeting that can help. So, bringing this back to a diet, if you can have a diet that's low in sugar and keeps your insulin level in the blood relatively low, then perhaps that can help in that.

Dr. Lev-Tov: And so, it's very easy recommendation for me as a physician to make, because it tends to be a very healthy diet because it involves eating less simple sugars or the soda drinks, all the stuff that's the processed food that really is really hard on us to digest and maybe raises this level of inflammation in our body seem to be healthy in so many other aspects. And in fact, the easy thing to do if you want to learn about low insulin diet, is to go to the diabetes.org, I think is the website and you look at the various diets, so then it can very easily tell you those types of foods that end up not raising your insulin very high. But, if you're listening to this and thinking, oh my God, what it could be, it's very easy. It's the stuff that you think it is, okay? No cheap sugars, all that good stuff. So, that's a little bit about diet.

Dr. Lev-Tov: We've done before a systematic review on this that was published. One of the things people have found that excluding breweries yeast from their diet, some people felt that there's some tangential against circumstantial evidence to suggest that it helps, and that's what to remove. There is some evidence to add vitamin B12, maybe vitamin D and zinc a little bit seems to be helpful. And some people use the zinc. All these are adjunct therapies. What I mean by that is that that's on top of what your doctor will give you some medication, but you can ask them, can I add that? Doing one of these things in and of itself, okay, will very unlikely to cure HS for you, but considering that as part of a whole treatment plan that may include something for the inflammation, may include a plan for surgery eventually. Even surgery, like you mentioned for you it was around the hair follicles, something like laser hair removal can help, right?

Jennifer: Yup, that's what helped me.

Dr. Lev-Tov: So, yeah.

Jennifer: But, does it matter with the laser hair removal where the area is and how far along you are?

Dr. Lev-Tov: Yes. So, if you have scarring, I don't think that will help. It's really for the earlier stage where you just have the bumps before the tunnels start. Even if you have tunnels and you have fresh bumps that come up, that may help. So it has two roles, the main role that we think it works is by prevention. So, you remove the hair follicle, you biliterate it. And with that, when you do that, a lot of the glands shrink with it because they don't have much use anymore. And so, with that you can prevent, but also some evidence anecdotal experience that comes out of Detroit, where they have a big center and they did a lot of patients with laser. They think that actually the laser itself also have an antiinflammatory therapeutic effect on those red bumps, red nodules.

Jennifer: That's interesting. I wonder if too, if to some degree there's also … I mean, because I know one thing, my dad was a surgeon and loved to learn. He worked with the eyes and he always told me, he said, light can be anti-microbial. So, I think there too, do you think there's any potential antimicrobial action of light therapy? I mean, maybe that has a role too?

Dr. Lev-Tov: Yeah, so no, that's a very good point. So, I think everybody who's ever went through and looked at a lab and if you look a picture of a lab, you'll see that they use purple light to kill the bacteria when they go home at night and they leave the purple light on. That's not just so they don't bump their knee when they walk in, in the dark, it actually is to make sure that fungi and bacteria don't grow there. And in fact, we use a lot of light in dermatology. We use it for psoriasis very effectively and other inflammatory conditions. The light has anti-inflammatory and certain wavelengths can be anti microbial, meaning killing bacteria.

Dr. Lev-Tov: So, but in HS there's no evidence, strong evidence that is working and it's not really something that we recommend. I think actually people now are using their light systems to help to disinfect masks for the COVID-19 epidemic. So true, it's a powerful tool, unfortunately not for HS, and it's not the first tool that has been tried and flunked, but yeah. And one thing where we're talking about this by the way, and mentioning all these therapies and I mentioned the concept of adjunct therapy is that my philosophy as a doctor is that if I start a medication and I see that it's working, but it's not giving you full therapy, a lot of doctors and patients tend to say, “Well, it's not working. Let's switch and try something else.”

Dr. Lev-Tov: My approach is to try adding, now not because I like to pump medications into patients or any supplements in people's body, but because remember we talked about this disease happening in different mechanisms. So, I try to have all of my patients have at least something addressing one part of the mechanism. And again, you try to tailor it, right? So, if I have a woman in front of me with HS and she tells me that her periods really make it flare, I'm going to try to work strongly on that hormonal component with lifestyle and usually medications for those cases. But whatever the case may be, it maybe what I see on the patient clinically, what they tell me, like I mentioned the sweating issue, so. You want to target multiple things that are happening, and I think that's where you get the most bang for your buck because there is a synergetic effect.

Jennifer: And so, for somebody who ends up with … I mean, it can be pretty painful. Things can become infected, and one of your specialties is wound care. So, could you talk a little bit about how should we be, especially for those who are listening to this who are really suffering right now, they're in a lot of pain. What do you suggest to help maintain the skin? I mean, it just feels like every movement I would make when I was in a flare, it felt like, I don't know, I was in excruciating pain at times. So, I'm just wondering what your thoughts are.

Dr. Lev-Tov: Yeah. So, a couple of things, first of all, you mentioned about the infection. And one thing I wanted to say is you got some antibiotics and other patients get a lot of antibiotics. Antibiotics work in HS, not because it's an infection because antibiotics have an anti inflammatory effect, and they help to reduce some of the bacterial load there, right? We talked about the normal bacteria being out of balance, so they help maybe restore that balance a little bit. But, that's what makes a lot of people think that, oh my God, I'm dirty. I had an infection. I took antibiotic and now I'm dirty again, and I got another infection and I took again antibiotics. And that's just not the case.

Dr. Lev-Tov: So, I want to remove that fiction out of people's brain. People with HS do not have infection and they're not dirty people, okay? It is absolutely not. And actually it affects people from all walks of life, okay? I can tell you as a doctor, I see people who have $0 in their bank and many, many zeros in their bank and people who are senior professors and people who work in McDonald's, it just doesn't discriminate, okay? So, I think it's very important, and people suffer with bad odor and a lot of drainage coming out of these tunnels. I mean, the amount of drainage that can come out is just overwhelming.

Dr. Lev-Tov: And that brings me to the issue of wound care, because it's an issue that's really been neglected in the medical attention that's been given to HS. What do I mean by that? Most of the care, when you come in to see a doctor will center around medical treatments and hopefully, maybe some people will end up in a surgery that can really resolve the situation for them. But for most patients, they're still stuck in the middle, they're taking medication that keeps it under control, but they still have those problem where the those tunnels or the even nodules break down and start oozing. And for that, we need good solutions. And the problem is right now, at least in the American system is that the wound care system is really poorly set up to fit the HS scenario. What do I mean by that?

Dr. Lev-Tov: In wound care, we used to treat leg ulcers, pressure ulcers. These are big wounds, they are clear where they are. We know where they are and we put a dressing on it and usually that helps. And the insurance companies understand, and the doctors understand and the nurses understand, but when it comes to HS, you don't have a big wound. You have an opening that's the size of maybe a pencil eraser. The largest one may be a pencil eraser. Yet, they drain like a wound that is half your length. They drain so much, right? Because you make a lot of inflammatory fluid. And so, how do I convince the insurance company to cover a dressing that's so big, like the size of half a leg for a tiny little thing that barely you can see. And insurance is now covered dressing by a surface area and it's absurd in a way, because really people with HS need the better dressing. They need dressing that can really absorb, and those can be expensive.

Dr. Lev-Tov: And the other shortcoming we have is that most of these dressing were designed for flat surfaces, for your calf, for your back, but they don't fit under the armpit. They don't fit in the groin, they don't fit where you need them, under the breast. And so, HS patients have been very resourceful and we try to help them as well. There's a bunch of tricks that you can do, but essentially it's important to remember a few things. One, when you talk to your doctor, you have to understand if they can order dressing for you. It's not obvious and most doctors can't. So, you may want to go initially to a wound center, a wound center may not have somebody who's a HS expert, but they know how to order dressings. They know how to handle this, that's their bread and butter. They're really good at it. So, they can order for you dressing that will fit well and can explain to you how to use it.

Dr. Lev-Tov: Some of my patients like very absorptive dressing, meaning some dressings that are, we call foam dressings, okay? They can absorb. And even medications that are called gelling fiber, they're like diaper technology. They absorb all the fluid into the dressing and then they form a gel, so they can harden and they can't go back into the skin. So, they trap the fluid there. And it's really nice, but those as you can imagine can get pricey. So, it's important to have a good insurance working with you.

Dr. Lev-Tov: One of the tips I also can share is that a lot of insurances will agree to cover something called calcium alginate, that's a type of dressing that's very absorbent. But the problem with it, because it's cheap, relatively cheap compared to the other dressing, insurance companies will cover it, but it falls apart. Now think about that tunnel or that little draining nodule that you have there, you don't want something like cotton candy stuck in your armpit, falling apart, getting into the hole. Yup, so that's a challenge.

Dr. Lev-Tov: So, there is a thing and people can write it down if they want, but it's called the contact layer. There's different brand for that. But it's the primary dressing, it's a dressing that comes in touch with your skin. And it's basically inert, it's like you can imagine like a lattice structure that sits on the skin and it sticks to your skin and it just sits there, right? And then you can put whatever you want on top, it's not going to break down into your wound. If it breaks down, it's going to stay away from it, but it allows the other dressing to do their thing. And that can stay on for a few days and it's low maintenance and everything.

Dr. Lev-Tov: And the other advantage it has is that you don't have to use a lot of tapes to hold things in place. It doesn't irritate that area. So, contact layers are one of the working horses in my clinic and really underutilized and I think it's something that people can use. And good wound care if you think about it, can help with the drainage, which is a big, big source of suffering for patients. And it can help with the odor, which is another source of suffering. And some dressings can help with pain. Some of my patients say that using a hydro gel or a hydrocolloid, these two types of dressings can help to soothe the red bumpy painful type of lesions.

Dr. Lev-Tov: By the way, that's one of the studies we're doing right now at the University of Miami is trying to figure out if I give … My hypothesis is that HS is a different disease on every day. On Monday, it's a painful nodule, on Tuesday it's a draining tunnel. And on Tuesday, it does nothing. And so, my philosophy is that we have to give, right, we have to give patients the opportunity. We have to give them the choice. So, we're trying to develop a basket, initial basket if you will, of dressing that you would take home and play around with, and then tell the doctor what you like, not the doctor telling you what to use, but you tell the doctor what you like. And then based on that, we fill in an order for you for the insurance to ship over to you. So, that's a paradigm, but we are so far from convincing people. We just need to generate the evidence. We just need to do more research.

Jennifer: And you were saying to me too, and which I wasn't even aware that there is an organization, which you're a part of the HS, Hidradenitis Suppurativa Foundation at hs-foundation.org, that has a lot of great resources for people who are looking for them. Because I mean, frankly, I didn't even know what I had. I mean, I was just horrified. And then, as I researched more and more, I think I got more scared and became more desperate with time to try to figure out how to get rid of it. And I can see from people that are suffering with this, it really does impact the quality of life. And sometimes they're left to just try and deal with it themselves because as you have … And I agree with you, I think going to a dermatologist is likely the best place to seek help because a regular doctor, they may not be knowledgeable on this type of condition.

Dr. Lev-Tov: Right. And I know that a lot of your listeners like alternative medicine, and I think you will find that a lot of people in medicine are open to alternative medicine. You just have to be acceptable to everything. That's my philosophy. I'm open to alternative medicine and integrative approaches to health. God knows, I run a meeting on that. I mean, but for some people, it may not be the right approach for them. That's not what they're interested in. And some people just need everything. And when you have a disease like HS, I think you'll find all of the doctors who are really specialized in HS very open-minded because we've all been humbled by this disease. It's a horrible disease.

Dr. Lev-Tov: One of the things we didn't mention about this, it's very horrible. It usually attacks young people at the prime of their lives. I mean, just imagine the level of suffering, if you are 23 year old woman or a guy, and you just started a new job and you can't sit in a board meeting without fearing that something's going to leak on your armpit, right? Or what if you want to be intimate with someone? I mean, just imagine the amount of suffering that this disease causes. It's just a brutal disease. So, all of us have been humbled and we're all open to things, and we, I think in dermatology, you will find more open minded people towards that. At least that's the impression I got.

Dr. Lev-Tov: And yes, you mentioned the HS Foundation, which God bless the HS Foundation for existing. The doctors there are just unbelievable group of dedicated people. I mean, most of the people, I joined more recently. A lot of these people have been doing this for years and really trying to push the agenda on behalf of patients. It's promoting research, it's promoting awareness. It's joined together with a Canadian foundation to run a meeting that really tries to push research in the area. And I got to say, thanks to the HS Foundation. The NIH now has a whole research program dedicated [inaudible 00:32:24] one program for those people who know what that means.

Dr. Lev-Tov: It's basically a research program dedicated to that. That's part of the successes of the HS Foundation and we certainly have a lot more to go. But one of the wonderful things about the foundation, first of all is a website that has a lot of resources there, can give you even a directory of doctors in your area. There's not a lot of doctors that specialize in HS, but if you're lucky to live in one of those areas, then you can find them and connect with them. The foundation also has a meeting that welcomes patients. So, if you're a patient with HS and you want to attend a scientific meeting, you may be a scientist yourself, or you may be a doctor in other specialty who is suffering from this, and you want to learn more about this disease, you can apply to come in.

Dr. Lev-Tov: It's not easy for people to sit through a medical meeting, but we allow a certain amount of attendees to be just patients, which is I've never seen in any other meetings. So, really a whole organization that is really dedicated. The whole thing is around the patient and their needs. Our entire mission statement is dedicated, that's why I encourage everybody to go like you mentioned to hs-foundation.org, or just Google HS Foundation.org and you'll get there. And yeah, absolutely.

Jennifer: And then people can find you also too in [inaudible 00:33:48].com/podcast, which I will link to that. And for any practitioners who are listening, there's also the Integrative Dermatology Symposium that occurs annually in October every year, I'm excited to go to the next one. And then there also is that HS-symposium.org as well, for those that are interested in attending that symposium specific on HS. But, I'm going to put all those links in the show notes and also a way for people to get in touch with you, because I think it's important for everyone to know that there are avenues it's not hopeless. And in fact, just from talking to you, I feel very hopeful for people that are still going through this, that there's new research coming, there's new [crosstalk 00:34:34]-

Dr. Lev-Tov: Oh my gosh, yes.

Jennifer: You shouldn't feel like no one cares because people clearly do. And it's so good to have an organization like what you're a part of and what you're doing and your own works to help people who are suffering with HS.

Dr. Lev-Tov: Thank you, and I'll just say two last points. One, you mentioned the word hope, there's a great organization called Hope For HS. And we run a support group here in Miami and they have a few of them around the country and they're a very useful resource and trustworthy resource and they collaborate with the HS Foundation. So, Hope For HS, I think they're on Facebook, Hope For HS. And the other thing I want to say is leave you with a sense of hope. This is the golden age of HS, just like psoriasis started 10 years ago, and now we have a whole slew of treatments. People walk around basically with skin clear.

Dr. Lev-Tov: This is now the beginning of the golden age of HS. We have numerous studies. I mean, we got all the big pharma company, very, very, very, very interested in this. And that's overall a good thing because that means that there's more awareness. That means, there's more funds for basic research to understand what's causing this, and of course for treatment. So, there's a lot of hope for people with HS.

Jennifer: Absolutely. Well, thank you so much for joining us. I really appreciate it.

Dr. Lev-Tov: My pleasure, it's awesome. And thank you for the work you're doing.

“So maybe there's a genetic background. We know that it runs in certain families and it's been associated with some syndromes that we can actually pinpoint to a gene, but it's not everybody. So, we can't say everybody has a genetic part. And the other part that may play a role are hormones.”