232: How Yeast + Zinc Can Play A Role In Hidradenitis Suppurativa w/ Steve Daveluy, MD

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Hidradenitis suppurativa (HS) is a progressive, underdiagnosed, possibly devastating condition. My guest today will discuss some possible ways to find relief.

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My guest today, Dr. Daveluy, is an associate professor and program director at Wayne State University in Detroit, Michigan.

He holds special interests in teledermatology, noninvasive skin imaging, skin of color, integrative dermatology, and complex medical dermatology, including hidradenitis suppurativa (HS).

Dr. Daveluy serves on the board of the Hidradenitis Suppurativa Foundation. He serves on the editorial board for the JAAD and is building a growing body of publications of his own.

Join us as we discuss how yeast and zinc can play a role in hidradenitis suppurativa (HS). We also talk about whether or not laser hair removal might be helpful.

Do you struggle with HS? Let me know in the comments!

In this episode:

• Does hidradenitis suppurativa (HS) progress?
• Yeast and HS – should you try a yeast-free diet?
• Diseases associated with HS
• How zinc could be helpful (RESEARCH)
• Antibiotics for HS
• Laser hair removal + HS

Quotes

“For the majority of patients, it does progress. Once in a while, there are some people where it doesn't really get past Stage 1. But even in Stage 1, you're still having these recurrent boils in your armpit, and your groin, under the breasts, and the buttocks.” [1:41]

“We've done a lot of studies to see what other diseases are associated with HS, and unfortunately, there's quite a long list.” [8:13]

Links

Follow Dr. Daveluy on Instagram | Twitter

HS Foundation website

Healthy Skin Show ep. 152: Hidradenitis Suppurativa: An Integrative Approach w/ Dr. Hadar Lev-Tov

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

https://pubmed.ncbi.nlm.nih.gov/17460404/

https://www.healio.com/news/dermatology/20191126/initial-data-support-zinc-supplementation-for-acne-vulgaris-hidradenitis-suppurativa

https://www.practiceupdate.com/content/efficacy-of-oral-zinc-and-nicotinamide-as-maintenance-therapy-for-mild-moderate-hidradenitis-suppurativa/99821

232: How Yeast + Zinc Can Play A Role In Hidradenitis Suppurativa w/ Steve Daveluy, MD FULL TRANSCRIPT

Jennifer: Thank you so much for joining us, Dr. Daveluy. I am so excited to have you here because, well, to be honest with you, we don't have a lot of episodes about HS on the show. And when I met you at the Integrative Dermatology Symposium, I felt like we just connected. And you're so enthusiastic too, about this, because it can be… Well, for people who are dealing with it, as you probably know your patients are, there's a lot of suffering that goes along with HS. And so I just love the amount of enthusiasm that you bring to, trying to not only help people, and figure this out, because it's so important, it's so needed. So, thank you so much for joining us today, I really appreciate it.

Dr. Daveluy: Yeah, thank you so much for having me, and for giving me this platform, and sharing this with your audience. Because, it's like you said, it's such a devastating disease that we really want to get the word out there that there is hope, and there are options. And there are some things you can do to try to combat it, and to make your life better, and there's just not enough awareness out there. So, thank you so much for having me. It's such a privilege and an honor, and I'm really excited.

Jennifer: Cool. So let's start this off… I think this is an important point to make, because I don't think that I necessarily made it in the other two episodes, where we've talked about HS. HS, and please, I want you to give your answer, I don't want to speak for you, but HS is a progressive disease, is that correct? So it's something that could start off as something that feels like an annoyance, but it can get drastically worse, yes?

Dr. Daveluy: Yes, exactly. And in case anybody isn't aware, HS, we keep saying, because it's hidradenitis suppurativa. So, it's a huge mouthful. So, we just say HS, because it's way easier, but you're totally right. For the majority of patients, it does progress. Once in a while, there are some people where it doesn't really get past Stage 1. But even in Stage 1, you're still having these recurrent boils in your armpit, and your groin, under the breasts, and the buttocks. But for a lot of people, it does progress, and the progression is usually more scarring, and more damage, to those areas, and to the skin. And it forms scars and tunnels that keep draining, and get swollen and painful, and it can be very painful. So, that is, like you mentioned, one of the most important reasons we want people to, sort of, be aware that it's a disease and that there are treatments. Because we want to treat as early as possible, and try to stop the progression, if possible.

Jennifer: And is it correct that if you progress to… Is there a Stage 3, Stage 4? Can you regress back or like, once you're there, you're there?

Dr. Daveluy: It kind of depends. So, the most common staging system we use is called the Hurley staging. There's a one, a two, and a three. And it was originally designed to see if people were candidates for surgery, because when you get the scarring and the tissue damage, sometimes removing it with surgery can be helpful. So, the Stage 1 was, you get boils that come and go, but there's not really any scarring yet. Stage 2 is, you're having some scarring and tunnels. And then Stage 3 is where it, sort of, took over the whole area. So, your whole armpit is just full of HS scars and tunnels.

Dr. Daveluy: So, for that system, you can't really go backwards. You sort of could, because if you have surgery, it removes it. But then at the same time, that's sort of a different assessment then. But especially when it comes to the boils that come and go, the red swollen ones, or the abscesses, those we can usually, kind of, get them to shut down and, sort of, reverse the disease. The scarring and the tunnels, it's a little bit trickier. A lot of times they will need surgery, because the medication treatments that we have, don't really remodel the tissue and make it better. But, for some people, they end up not even needing the surgery because the scars, kind of, calm down enough that they don't have any symptoms anymore.

Jennifer: So with this, is there any possibility of alternative options, aside from diet? I know at the conference it was mentioned that, potentially, like a yeast-free diet. Have you ever seen that, in practice, be helpful for your HS patients?

Dr. Daveluy: Yeah, I have. One of the challenges with HS is, and I always tell my patients this, there's a lot of trial and error. For some people, something works great. And for other people, it doesn't seem to do a whole lot. So unfortunately, it means, kind of, trying things out. But we end up talking about diet quite a bit because a lot of people are interested in, trying things in their diet. And a lot of people understand now, that connection between your skin and your health, and your diet, and your gut. So, like you mentioned, the Brewer's yeast diet can sometimes be helpful. And we think patients have an immunologic reaction to the yeast. So, when it's in their gut, their immune system gets all excited. And for whatever reason, it shows up as HS. And they've had a couple studies where there's an antibody that the doctor can check, to this Saccharomyces cerevisiae.

Dr. Daveluy: And if you have the antibodies, it's much more likely that you're going to benefit from the Brewer's yeast diet. And I do tend to check it in people, unless they're really excited about the diet, because it's a tough diet. You end up avoiding fermented things. So you're avoiding beer, a lot of baked goods and bread products that have yeast to help them rise, ketchup, mustard, vinegar, soy sauce. So, it's a pretty tough diet to really avoid… It's amazing how much we eat yeast, but I guess you figure all these things that, like I said, the bread and fermented things, they've got yeast in there, kind of, doing the job. So, I usually try to check the antibody, and I found in the people who have the antibody, the diet seems to help a lot. Other people are like, “I'm just going to do it.”

Dr. Daveluy: So, them, I never know. Did they have the antibody or not? But if they find it works, great, the other one is milk. A lot of people with HS, just like acne, dairy products. And I should say dairy products, not just milk, because it's yogurt, it's cheese. Some studies have even found yogurt was sort of a bigger culprit than just the regular milk, which…

Jennifer: Really?

Dr. Daveluy: Maybe has to do with…

Jennifer: Yeah, could be the yeast.

Dr. Daveluy: Right? Yeah. So, that one is another one that I try to get people over. And like you probably know, with your experience, some people are just ready to get rid of dairy. Other people, they love their dairy, and it's a struggle. So, we talk about, “Well, can you reduce it?” Or I'll even say, “Can you stop for a couple months, really avoid it, and then try it back again and see what happens, see if it makes a difference.” But those are the really big ones. Otherwise, the literature for diet with HS, some of the other ones are, sort of, just the healthy diets. Avoiding saturated fats, and avoiding a lot of refined sugars, which we're finding more and more, those are just bad for all diseases.

Jennifer: So, any connection… It's interesting that you bring up that Anti-Saccharomyces Cerevisiae antibody. So, that was, kind of, brought to my attention a number of years ago. That you can also see that, elevated in Crohn's, or certain forms of IBD. Do you notice… And if you don't know, it's totally fine, but do you notice that there is any correlation? And I'm just asking, because I don't know, between, maybe like IBD. So, inflammatory bowel disease and HS.

Dr. Daveluy: 100%. They've actually, in bigger studies, where they study big groups of people, shown that there's an association and that having one, puts you at increased risk of having the other.

Jennifer: Wow.

Dr. Daveluy: And luckily, it's not a huge increase in the risk, but it's still significant. And it's kind of interesting, because there's even this sort of overlap version, where the Crohn's disease can show up in your skin and it can look so much like HS that it's… You literally have to do a biopsy to tell the difference because it gives you these ulcers, and open skin, and it tends to be, in, and around, the groin area. And people think they have HS, and we go, “Oh no, this is Crohn's affecting the skin.” So, yeah. It's so great that you hit on that because there is this connection between them. And you know, it's interesting because I've never seen a study that looked at the antibody, in the patients who had both, to see, maybe that is the connection, the common thread for the two.

Jennifer: I don't know, that would be fascinating. I'm surprised I threw you a curveball, because I just was kind of curious, you piqued my curiosity and you're like, “I got this.”

Dr. Daveluy: Yeah, it's funny.

Jennifer: I love it.

Dr. Daveluy: We've done a lot of studies to see what other diseases are associated with HS, and unfortunately, there's quite a long list. Which kind of leads us to say, “All right. Even though it shows up in the skin, it's really a systemic disease. It's really your whole immune system.” And we think that those perturbations or, problems with the immune system, just show up in all kinds of ways, like arthritis. They have a high risk of diabetes, obesity. Of course, depression and anxiety, because it is a devastating disease, inflammatory bowel disease. So, it's very interesting, the things that, sort of, you're at increased risk, if you have HS. And you know, like I said, some, you could say, maybe like the depression, is a consequence of the disease. But others, like the inflammatory bowel, it's some kind of immune pathway, or some kind of common trigger, that we're still learning more on. But luckily, we're doing a lot of research to see those associations and to try to, sort of, screen our HS patients for the other conditions, to see and treat those. Because we don't want to miss those either.

Jennifer: That is so fascinating and awesome, that you also have the awareness to overlap these different pieces. So, somebody who's dealing with HS, and they've heard us talk about this very specific test. This is something that a dermatologist could test for, if they were to ask their Derm like, “Hey, you diagnosed me with HS. Could we look and see if I have this antibody present?”

Dr. Daveluy: Yeah. It's a pretty easy test to order, and it's pretty widely available. So, it's an antibody to the Saccharomyces cerevisiae, and the Saccharomyces starts with an S. So, sometimes to abbreviate, you just write S, and then the cerevisiae starts with a C. And it's the IGG against them. But usually, if you just write antibody, the lab will know exactly what to do. So luckily, it's widely available and yeah, especially like I said, if you're considering that Brewer's yeast diet, because it is kind of tough, not a bad idea to ask your doctor to check it. Just because, it might, kind of, give you that extra motivation to say, “All right, this is a tough diet, but I know I have a sensitivity to this yeast.” And then it, kind of, just gives you that extra piece of the puzzle.

Jennifer: I want to add to this really quick, from a clinical nutrition perspective, just for anybody listening to this. This also means that if you do have this antibody, you really shouldn't be supplementing with Saccharomyces boulardii, which is a probiotic that is commonly available on the market. It's available in pharmacies. Because it's a lot of times used for what's called travelers diarrhea or for antibiotic-associated diarrhea incidents, we'll say. But, a lot of times, people will use S boulardii as a supplement, or it's included in a probiotic formulation. And that's one instance where you do want to avoid that, if you do have this antibody present, so, just a little tidbit.

Dr. Daveluy: Yes, thanks for bringing that up. Yes. Especially because a lot of times people just say, “I'm on a probiotic.” And it's like, well, check what strains are in there. So yeah, thank you for that.

Jennifer: They can make a difference. So, let's talk a little bit about zinc. That's what you and I were really, nerding out about. I, honestly, it was just a thought, could zinc be helpful? And you were like, “Oh, don't worry. I know a lot about this.” So, can you talk a little bit about what the relationship, and your experience, has been, in using, maybe zinc, to help HS patients. Again, with the understanding that everybody is different? Some people it seems to help and other people, it doesn't, as many of you listening know.

Dr. Daveluy: Yes, and that's a really good point. And that's been a lot of my experience with the oral zinc. So, there were a couple of studies that showed, supplementing with oral zinc can be helpful. And we know zinc has this, sort of, calming effect on the immune system and helps the immune system to not be too overactive for a lot of things. So, they had this study and they supplemented with 90 milligrams of zinc, and they found that the significant number of the people with HS improved. And then eventually, after a couple months, they were able to even reduce the dose, because they did have some stomach and gastrointestinal upset with it, which is one of the issues with zinc and the higher doses especially. In my experience, it's been a little bit more hit or miss, like you said, it seems to work pretty well for some people, not so great for others.

Dr. Daveluy: I often use it as sort of an add-on, if our regimen is doing pretty good with some of the other medications, but not quite there, I'll say, “Hey, why don't we try adding on a little bit of zinc and see if that kind of tips the scales in our favor.” And then another HS expert was telling me, what he started doing, was checking zinc levels ahead of time. So, I've started to do that a lot more. And if I find people are low in their zinc or even, kind of, on the low end of normal, I say, “Why don't we give zinc a try?” And maybe it will be more helpful. I haven't had enough people to do it, to go back yet and kind of put it together and say, “All right, this really does seem to make a difference in it.” But just kind of anecdotally, that's what I've been doing with the oral zinc.

Dr. Daveluy: And then, there is zinc available, topically, in soaps and shampoo. So we use it for dandruff, Head and Shoulders is zinc. And so that's kind of an easy one that people can try. You can either use Head and Shoulder's shampoo to just kind of wash the areas, or any zinc shampoo, that's like dandruff shampoo, or they make it in bars now, too.

Dr. Daveluy: And I've had some patients who really like the bars, because sometimes shampoo is a little bit tricky to wash, and messy, but the bar soap seems to help some people. And we think it has a bit of a calming effect, and it's kind of an easy one to try out because it's over the counter. So if you're thinking, “Oh, I think I do have HS. Let me try some of this zinc soap and see if that kind of helps.” Again, I don't know if it's going to, completely clear you up, or get it completely under control. But with HS, I always say, every little bit helps. If we can find five treatments that make you 20% better, you'll be 100% better. It's just, then you'll have five treatments on board too, which is a struggle. But the disease is so terrible that sometimes you're like, “All right, we've got to do what we can.”

Jennifer: Yeah, and to manage… Or, and I shouldn't say manage, because I hate how we're just like, “Let's manage this.” I feel like that's what we do. You know, it's one thing, my dad was a surgeon, and he was just like, “Yeah, my one grievance is that we've turned everything into just managing diseases anymore and, instead of trying to figure out what they are.” But he was old school, and so I feel like with HS, it's hard, management is hard. It can be really hard. It can be incredibly, like you were saying, there's a lot of depression and anxiety. There's also trauma that goes along with it.

Jennifer: It is, especially if you are at a more severe stage of things, my goodness, the level of pain that you can experience. And then even the inability to have your, kind of like, wounds close up. Dr. Lev-Tov had spoken on another podcast about this, the difficulty in getting some of these wounds to actually close when the boils and cysts start to drain. And that didn't happen for me, they never drained. They would just, eventually, shrink back down and kind of disappear and feel like there was almost like a pea, or a hard lima under my skin, lima bean. But it's just so frustrating.

Dr. Daveluy: It's so hard, and it's such a devastating disease. And then to add on top of it, there's not great awareness among healthcare providers out there, it's getting better. But a lot of people don't know it exists. The patients with HS, they often have this difficult journey of even getting to the diagnosis. And there's still an average of seven years delay between…

Jennifer: Oh my gosh.

Dr. Daveluy: It showing up and yeah, it's awful, and getting the diagnosis, and it's not like people are staying home. They're seeing multiple doctors during that time, but they just, kind of, either don't put the whole picture together. They think, “Oh, you just have a little infected abscess. We'll just drain it, give some antibiotics.” Or they think, “Oh, you've got some kind of infection problem, or you're sensitive to your deodorant, or it's puberty. You're just, “You know, the hair, shaving is doing it.”

Dr. Daveluy: So, there's, kind of, all these things where people just miss it and people go on this struggle. And then it kind of causes people to lose hope because you've seen multiple doctors, no one really knew what you had. So, then you see this next doctor and you're like, “Well, they're probably not going to know what I have. They're going to have me try something that's probably not going to really work”. And it just wears on you. And then, like you said, on top of it, the disease itself, it affects your social life. It affects your activities. It affects what kind of bathing suit you're going to wear, exercises you can or can't do, that make it worse. I had one patient and her story was terrible. Luckily, we finally got it under pretty good control. And she came back and said, “Oh, Dr. Daveluy, I sat on my sister's couch.” And I was like, “Okay.” And then she goes, “No, I've never sat on her couch. I was always afraid one of my boils would rupture and the drainage would get through my clothes and stain her couch.”

Jennifer: Oh my gosh.

Dr. Daveluy: Now it's actually under control, to the point that I sat on her couch. And I'm like, “The things we take for granted.” I've never thought twice about sitting on my sister's couch. And I'm just like, “Oh my gosh, this disease, like you can't…” It affects everything in your life.

Jennifer: It does. Wow, that's such a powerful story, too. I think anyone listening to this as well, who might not have HS. You know, it's interesting, I think in sharing different stories about different skin conditions. I think when you have one, you start to have more empathy for someone else, who might be going through something that's very different from what you experienced, but you're like, “Wow, that's that? Yeah.” I can say, like for me, I had eczema on my hands.

Jennifer: So, just the act of turning a knot, trying to grip and turn a knob, was really painful when my skin was all dried out, and would tear very easily, and be incredibly inflamed. I took for granted being able to just handle things, and touch things, and be able to wash my hands. It was not… So, this is a similar incidence, where there's so many quality of life factors, at play. In your experience, do you feel like antibiotics are a crucial part of the puzzle? What's your stance on them? I know I took multiple rounds of antibiotics which, it would help, but eventually they would just come back. So what do you think about the use of antibiotics for HS?

Dr. Daveluy: I, sort of, have mixed feelings on the antibiotics, for that reason. They're very good for temporary relief in a lot of cases, but then you sort of need something that's safer to use long-term and that's going to be okay to use long-term. We've tried using lower doses of antibiotics, the sort of anti-inflammatory doses. But it's interesting, because you figure, those anti-inflammatory doses. Yeah, the full dose isn't getting to your blood, or to your skin, but it's still in your gut. So, it's still affecting some of your microbiome in some way. And so, I do use them, and they're often one of the things we go to when someone comes in and they are flared up like, “All right, let's do a course of this antibiotic. Let's try this one.”

Dr. Daveluy: Like you said, it's kind of hit or miss, some people do great, some people don't do great. Some people will clear up for a long time and then they'll, if they flare up, they'll just need another little course. So, we're trying to figure it out, and the relationship with HS and bacteria is very complicated. And we're still trying to figure out how the skin bacteria might play a role, how the gut bacteria might play a role. We know it's not an infection and it's not contagious, but clearly there's bacteria in these tunnels, and they might be stimulating the immune system in some way.

Dr. Daveluy: So, fortunately, there are people much smarter than me doing some awesome research to figure out what is going on in HS. The bacteria, the immune system, what are these things that are driving it, and how can we get at them? So, hopefully moving from managing, to more preventing and curing, which is just so great. I feel like you do, where I feel like medicine goes through these, sort of, changes. And so when more medications started coming out, it was like this great revolution, like, “Oh, there's a pill for that. Just go talk to your doctor and get a pill.” And now things are kind of shifting back to like, “Well, I don't just want to be on pills. I want to get at the root cause of the issues.” We were, luckily, moving a little bit from the instant gratification, to more like, let's get to the root of the issue.

Jennifer: Yeah. And, also too, I think, this can be a lifelong disease. I feel really lucky that I was able to arrest where mine was. Thankfully, as I shared in a much earlier podcast, about being given a tip about laser hair removal, which wasn't even suggested to me by my dermatologist. And no offense to her, I don't know that she really had thought of it. She just was giving me antibiotics. And I was the one to say, “Hey, would I be a candidate for HS? Or excuse me, the laser hair removal, would this be helpful?” And she's like, “Well, we could give it a try, but it's out of pocket.” And it was expensive. But I think about, after seeing this, the level of suffering that so many people with a more advanced… And because of how often I was getting these flares that I think I probably was headed in that direction, at some point. That I may have… It was money well spent. Your thoughts on the laser hair removal for HS.

Dr. Daveluy: It can be really helpful. And there's one or two really good studies to show the one type of laser. And we're actually just wrapping up doing a study here, on a different laser hair removal that we, sort of knew it would work because they're both laser hair removal lasers, but technically they're slightly different. So we said, “All right, let's make sure that we've studied both, just to make sure.” Because once in a while, there's something that you think would work and it doesn't, but we got really good results. And like you said, early intervention is better. Because if you can get to it before there's a lot of scarring and tunnels, it's even more effective. It seems to work the best in the armpits, followed by the groin, followed by under the breast, which we think is possibly because there are more hairs in the armpit compared to the other areas. Especially the under the breast area, but it still has some impact there, and can be helpful.

Dr. Daveluy: And then, like you said, the insurance coverage is such a struggle. I've been able to fight a couple times and get it covered. But then other times, we just sort of try to offer a discounted rate for patients to get it. Or, luckily, we had the study for a while and I'm like, “Hey, just enroll in our study. It's free.” We're just doing it for the study purposes. So for a lot of people, it turns out really good.

Dr. Daveluy: Again, not everybody, but we're hoping if we have more and more of these studies that show it works, we can take these to the insurance companies and say, “Hey, you really need to cover this.” They just kind of have this view of like, “Well, laser hair removal is a cosmetic thing.” But we're like, “No, no, no.” We're using it to treat a disease, and a disease that could cost the insurance company a lot more, if they would look at, down the road, surgeries, hospitalizations, other medications for it. But it always takes a while to make a change. But yeah, it can be a really good option. And luckily, awareness is increasing more and more among dermatologists, and other doctors, that it's an option to try it. Because I think too, a lot of people were nervous to do it before like, “Oh, you have this HS. I don't want to, I don't want to use a laser in your armpit. I don't know what's going to happen.” But now, fortunately we know, it'll actually help.

Jennifer: Yeah. I had noticed that, progressively, with each treatment, I think I had a total of six treatments. It didn't seem to flare. If it did flare, it wasn't as bad. And then, eventually, it just stopped. That was my experience. I know a few people have mentioned to me on Instagram that they did try it and this is one of the… “I tried it, it didn't work for me.” So, it's not going to work for everyone. There's no guarantee, there's no silver bullet. Unfortunately…

Dr. Daveluy: We wish.

Jennifer: We wish, but there's not. I wanted to ask you, because we were talking about this before we started, and I think this is important to mention, to anybody listening to this. There's a lot of assumption out there that you have to be overweight, basically, to get HS. And I think that's a very inaccurate… The people I've known who've had HS, are not overweight. I was not at the time when I developed it, I would almost argue looking at photos of myself 15 years ago, that I was probably slightly underweight. I've also known men who've had it. So, do you want to talk a little bit about what the assumption is, of who gets HS, and then the reality of who gets it?

Dr. Daveluy: Yes, totally. And I'm so glad you brought that up because I it's really hard when someone, sort of, doesn't look like the typical HS patient. And then someone tells them that, and says like, “Yeah, this isn't really a disease you should get.” And you're like, “Should? Who should get it?” So, like you said, when we look at, sort of, everybody who gets it. There are, it's a three to one ratio, of females to male. So 75% of the people with it are female, 25% are male. So then people are like, “Oh, it's a woman's disease.” And you're like, “Well, 25% are males.” The majority are women, but that doesn't mean men don't get it. And then, like you said, the same thing, it tends to be associated with obesity. And it's higher risk in darker skin types, like African American.

Dr. Daveluy: But that doesn't mean that people who are skinny, or white, don't get it. It just means that there's a higher risk in those groups. And I think, unfortunately, that gets confused a lot. I think sometimes people, doctors or healthcare practitioners, they're trying to learn about all these different diseases. So, they kind of picture in their head like the typical patient, the typical patient with heart disease looks like this. And the typical patient with this, looks like this, and they forget that, just because you're not the typical patient, doesn't mean you're not a patient with the disease. You can still get it. You can be thin, you can be male, and you can still get HS, you're just not the typical HS patient. But it's also arguable that there is no typical patient. Because like we said, the treatments, there's no typical treatment that works for everybody.

Jennifer: Yeah. And also too, as you had had said, it takes so long to even get a diagnosis. So, it's possible that there are a lot of people who… There could be underdiagnosis unfortunately, because of shame. I think, back to people that I knew before, long before I had HS and I was like, “Oh, those weren't just like a cyst that came and went, that person actually had a CHASS. But the one person I know of was a guy, he never went to the doctor, so he never got seen for it, but would be in horrific pain when he would have a flare. And then eventually, actually, his would burst and ooze out, and then eventually would subside. And so, I think there's probably a lot of underdiagnosis. And as you had shared, there was one person in the research that was involved with the research, right? She didn't even know that-

Dr. Daveluy: Right.

Jennifer: It was maybe what was going on with her.

Dr. Daveluy: We were getting ready to do a clinical trial for HS, and she was my research coordinator, helping me. And as we're getting ready for the trial, and she was a research coordinator for all kinds of different trials for medications. And as we're, learning, and they're going over what the trial protocols, and she's seeing photos, and things. She's like, “Oh my gosh, I think I have HS. I get these boils, they come and go, they're in my armpit, they're in my groin.” And I was like, “Yeah, you have it.” And it seems like every time I give a talk, there's at least one person in the audience who comes up after and either says, “I think I have it. Or I think a family member has it. I think my daughter has it.” So I think you're right. There's sort of a lot of underdiagnosis.

Dr. Daveluy: And then, like you said, especially in the early stages, it's easy to, kind of, chalk it up to something else. Like, “All right. I started shaving my armpits with a different razor. Maybe that's what caused it.” Or, this changed, or that changed or… So, I think there are a lot of people out there who have it and we don't even know. And, luckily, the awareness among patients seems to really be increasing. I'm seeing a lot more people who come to me and say, “I figured out I have HS because I was online and talking in a Facebook community.” Or I listened to a podcast and they mentioned this and I thought, “Oh my gosh, that's me. You know, I have that.” So, that is super helpful, that people can kind of come in and say like, “I think I have HS.” And at least then their doctor has a little bit more help, to say, “Oh yeah, I think you're right.” We always kind of dread when people come in with their own Google diagnosis, but sometimes it actually is right, and sometimes it's perfect.

Jennifer: And I think it's okay. I mean, I've found in my experience, it's okay if you come in and say, “Look, is this what's going on?” Especially if it's something where, maybe, I've had some doctors where they weren't sure. They're like, “I'm not really sure what's going on here.” And I'm like, “Well, I was looking at some different things and considering these factors. Could this be something we should consider?” I just pose it like that. Very like, this is what I have. That's not the way to go into the conversation, but to say, look, is this potentially what's going on here? Could we consider this?

Dr. Daveluy: Yeah, and I love that, because I think that's perfect. That way, it's sort of like we're working together to get there versus like, “I know this is what I have and I want this treatment.” And it's like, “Well, you might not have that, but you're right, bringing it up.” Because that way it is helpful. Because a lot of times, then your own research too, will sort of guide you to ask more questions like, “Oh, do I notice an association with milk, or with Brewer's yeast and my diet?” Or, does this happen or that happen? And you kind of come in ready to talk about everything.

Jennifer: Yeah, and it does also help too, because you can then say, “Oh wow. You know what I noticed?” Because you'll see the symptom, you'll go, “You know what? This actually does happen to me.” And you'll know what you need, to also help the doctor make a diagnosis, from listing out symptoms that maybe you just blew off, and thought weren't a big deal. But actually, were very crucial to getting to the appropriate diagnosis. I think the point that I'm getting from you is that, it's really important to talk to a doctor, sooner rather than later, not to wait. Get the diagnosis and start working on it, when it's at a stage where it's not life wrecking essentially.

Dr. Daveluy: Absolutely. Perfect, yes.

Jennifer: But those who, where it has progressed, there are options. And if you can find a doctor like yourself, I think it's important that you have a partner, right? On this kind of journey, you need somebody who really understands HS. And you see patients yourself, correct?

Dr. Daveluy: Correct, I do, yes. In Dearborn, Michigan, which is just outside of Detroit.

Jennifer: Perfect. And we'll put your link to your practice. And also you're involved with the Hidradenitis Suppurativa Foundation, HS Foundation, correct?

Dr. Daveluy: Yes. I am so proud of the work that I can do through them, and with them. They are really advancing the field, both in research, and awareness, and education. So, the HS foundation website is a great resource. If you're thinking you might have it, there's educational materials that can, kind of, help you guide you toward it. If you know you have it, they post event that are going on, educational things. There's a physician finder because, like you mentioned, unfortunately, we're working on getting everyone to get really expert at treating HS, but we're not there yet. And so, there are experts scattered throughout the country, but not everybody has quite developed the expertise yet.

Dr. Daveluy: So, sometimes it's important to find that person who can really, like you said, be with you on the journey. And I love that you mentioned it as a journey, because with HS, I literally tell my patients, we're on this journey together now. Because it usually takes a little time to find the right treatments, and the right lifestyle modifications, to really get it under control. But I always tell them, just have hope that I am not going to, I'm going to be there with you. I'm not going to make you walk this journey alone.

Jennifer: Yeah. Oh, well, thank you so much for being here. Hopefully, we can have you come back and talk about more on this topic because I feel like so many people need to be connected with the options that currently are out. And I love that you're doing research too, that is awesome. But thank you so much for being here. It's been great having you and, hopefully, I can have you come back.

Dr. Daveluy: Yes. Thank you for the opportunity, I would love that. So, we'll do another one in the future. Thanks again. This has been spectacular.