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Dermadry® BLOG

In Conversation with Lisa J. Pieretti of the International Hyperhidrosis Society

By Sam Nardi 2021 Jul 22nd
Dermadry Team

In Conversation with Lisa J. Pieretti of the International Hyperhidrosis Society

We spoke with Lisa J Pieretti, Executive Director and Founding Member at the International Hyperhidrosis Society (IHhS), about iontophoresis treatment and hyperhidrosis research. Learn about the future of hyperhidrosis and how the IHhS can help you if you suffer from excessive sweating!

Watch and read our interview to learn more about excessive sweating, iontophoresis treatment, the importance of opening up about the condition, and her hopes for the future of hyperhidrosis treatment and development.

About Lisa J. Pieretti

With a background in business and economics, a foundation in design and marketing, and a passion for ethical, mutually beneficial collaborations, Lisa’s life's work has been developing programs, innovations and relationships for the greater good. As IHhS Executive Director, Lisa oversees all IHhS activities including developing and leading programs to raise awareness of hyperhidrosis (Hh)-related issues among: patients, healthcare professionals, biotech, pharmaceutical and medical device organizations, educators, employers, regulators, and the public.

Lisa also leads IHhS’s efforts to promote and implement research imperatives, advocate for access to safe and effective treatments, educate medical professionals, and foster an impactful grassroots community. Throughout, she stays true to a core belief that patients, the medical profession, and industry leaders can partner to exact positive change that benefits all involved. And while she wears many hats, her patient advocacy hat is the one she feels the most honoured to put on.

About the International Hyperhidrosis Society

Founded in 2003 by an elite team of world-respected physicians and experts in hyperhidrosis research, the International Hyperhidrosis Society is the only independent, non-profit, global organization that strives to improve the quality of life among those affected by excessive sweating. Its community brings together people from all over the world; creating a global network for advocacy, support, and information-sharing.

International Hyperhidrosis Society’s website: https://www.sweathelp.org/

Watch our Interview

Interview Transcript

Amanda: Hello, my name is Amanda Colapelle and welcome to Dermadry Segments. For today's episode I'm joined by Lisa Pieretti, she is the Executive Director and Co-Founder of the International Hyperhidrosis Society. Thank you very much for meeting us today.

Lisa: Yes, you're welcome. I'm happy to be here. Thanks for the invitation.

Amanda: You're very welcome. So just going a little bit into hyperhidrosis and also getting to know about yourself a little bit. We would like to know how the Hyperhidrosis Society came about.

Lisa: So in 2003, I was working in a medical communications company. And prior to that, I was working in clinical research. So I really do love clinical research. I love science, and I love innovation, and I also love marketing. So the IHHS really is the combination of the two, but at that time I saw that there was a new treatment in the publications that just us scientists read there's a new treatment for hyperhidrosis. And I thought, I don't even know what this condition is, let alone a new treatment being brought about. So I did a little digging and I saw that it was largely unknown and at that time we all thought it was rare. So I thought, what a cool thing, if I could bridge the gap between the people who need help and help, and those who are about to bring it forward. So bridging that gap, instead of it coming from a commercial standpoint, coming from a benevolent standpoint of unbiased, fair, trusted information. And so I started the International Hyperhidrosis Society in 2003 with a number of other physicians from around the world.

Amanda: Wow. And what are the values and missions of the organization?Lisa: So, you know, it's been 17 years now and so things have changed, but some things have very much stayed the same. So at the beginning, when we thought it was rare, we wanted to find out more about that.

And it was, it was considered so rare that there wasn't even a diagnosis code for physicians to note. So we went to Capitol Hill and we petitioned for a diagnosis code, is one of the first things that we did. So if you can imagine, 17 years ago, we started with almost a disease that didn't exist, but with the treatment that was coming on, we had no idea how prevalent it was.

We had no idea, no, doctors did not know how to treat it, let alone diagnose it. So it was a big unknown. So over the years we've worked to increase awareness in clinicians, increase awareness in the public and increase awareness among those who suffer with it. And then the holy grail is also to increase awareness with the innovators so that they can produce better treatment.

Amanda: Wow. And I think that's really something really important, like you said, it was a disease, basically something that was so not spoken about at all. And now we're getting to a point that people are becoming aware of it and people want to speak up, or even the ones that are shy about it, they're there saying, oh my God, this is how I feel. And we feel like this is so important right now. And that is also why we wanted to speak to you today and just spread the word and spread awareness. There's so many people, even in my friends and family, that actually, I didn't know that they had hyperhidrosis before and then they're like, “oh my God, yeah, this is something I've been dealing with for a very long time now”. So, I think it's really important to spread that awareness.

Lisa: So when we coach and teach clinicians on diagnosing hyperhidrosis we have this fabulous questionnaire that we've developed over the years and we're hopefully getting it, we'll publish it next year. But one of the questions is asking about “do other members of your family have hyperhidrosis” and the answers are not binary ,it's yes, no, and I don't know, because folks don't talk about it. They don't share it because there's a stigma. So when you ask about what is one of the main missions right now, I am on a mission to end the stigma associated with excessive sweating, to validate that it's a bonafide disease, and also to validate that it's a spectrum. So not everyone who has hyperhidrosis or who is bothered by their sweating sweats exactly the same. Some people who sweat, if you measured it on a gravimetric scale, you can have some people who sweat four to five times the amount, and it bothers them less than someone who sweats twice the amount, because profession, because of their personality, their makeup, you name it, you know?

So I want to pull all the judgment off of it and just say, okay, can we please just deal with what, what folks are dealing with and solve this very curable problem?

Amanda: Yes, very well put. And I think that's something that will allow more people to click on the website, find out information, and educate themselves. And even when it comes to practitioners, I feel like people are becoming more and more aware.

Lisa: So the International Hyperhidrosis Society has a really comprehensive approach to the Hyperhidrosis Awareness Month. So it's not just about helping the community feel engaged and feel cohesive and powerful, but it's also to raise awareness in clinicians and different groups.

So you look at just today, we did a social media post about all of the alliances who have agreed to share the awareness with their clinician memberships. So like the Canadian Dermatology Association, the National Association of School Nurses, the European Academy of Dermatology and Venereology.

So what we did was a tremendous amount of work. So we've been working on this probably for the past year, since last awareness month, we've been working with these different groups to say, would you please help spread awareness with your constituents? Because we can't find all these guys. Another one is podiatry because of sweaty feet.

So take a look at those groups and, and please join us in congratulating them, including amplifying our voice to their constituents. It's huge. It's huge. Tons of work went into it. So I had to shout out to my staff there. They worked tirelessly to, you know, how it is right, following up.

So, we have to take a look at the folks who were there. It's so impressive, I have to say.

Amanda: We have to congratulate your team as well. And what projects are you guys currently working on or for the past year now, especially for hyperhidrosis month?

Lisa: So for Hyperhidrosis Awareness Month, we've been able to announce some really cool things.So the first announcement we made, and this is like a big shout out and thank you to you guys, because you help support the over 550 kits going out to clinician practices in the U S so these kits included posters. About real people who have hyperhidrosis talking about their story of when they had it as a child.

And what this does is it helps people to understand that hyperhidrosis starts in childhood. So this helps folks who have it, and folks who don't have it understand that this is a childhood disease. So, you know, it needs to be paid attention to cause these kids are suffering. And then also in the posters were real people and they, as adults, reflecting back on their childhood with hyperhidrosis and they're real people who have advanced degrees.

So these are folks who are super impressive. So I'm trying to demystify, some of the, or de-stigmatize excuse me, some of the aspects that people have about someone who sweats, excessively thinking that they have these other problems, that other negative connotations. Well, here we have PhDs who had hyperhidrosis as a child, and now he's a PhD professor at a very impressive university. He just got tenure. So these are champions. These are survivors and I hold them out. I don't need celebrities. These people are my celebrities, so I hold them forward to everyone else to see and be inspired by and have like that look that you have on your face right now. I want that in my 365 million community.

Amanda: I think that's actually, in total, that's exactly what we're trying to achieve as well. We just want to get that spread. We want to get the most education possible, and we really appreciate meeting with you today and explaining also to the viewers about hyperhidrosis. And that's actually leading to my question now for the viewers that are either unsure if they do have hyperhidrosis or don't know what it is, what would your explanation be on like what causes hyperhidrosis?

Lisa: Right. So I think if you visit our sweathelp.org and go into ‘About Sweating’ and ‘About Hyperhidrosis’, we have an encyclopedia of information there and research, as you know. So look there for sure. But here I'll give you the short answer. Your question of what causes hyperhidrosis is actually very interesting because no one really knows why.

No one knows why. And that's why the treatments are so varied. That's why you have, we used to have an illustration of this. It's really interesting, of all the treatment options and how they, the mechanism of action, if you will. So you have antiperspirants that clog the sweat duct. You have surgery that cuts the is from the, the brain to the nerves, stops the messages right there at the nerve endings.

So we don't know what turns on the switch for sweating and why it doesn't turn off in people who have hyperhidrosis. Is it overactive sweat glands? We don't know, but we don't think that it's too many sweat glands and we don't think the sweat plans are larger. I've seen some products out there say that people have extra large sweat glands who have hyperhidrosis and that’s not the case, and they don’t have more sweat glands. There’s a neurologic pathway that's not clicking off. So it's really interesting, I mean, you guys are Dermadry, right. But lots of you know, and we approached dermatologists, but way back at the beginning, when we were thinking, who do we want to treat patients with hyperhidrosis, we really could've given it to neurologists.

We also could have given it to endocrinologists. But we went with dermatologists because they were a small group and we could get to them and get the information to them. It is a neurologic condition at its root.

Amanda: And I even, when it comes to like the treatment, I know you mentioned a few options but there are different options out there. What are the benefits and risks associated with the different types? I know there's a few.

Lisa: You have to go into our treatment section, for hyperhidrosis treatments, go there. We have a matrix that shows you all the different treatments. And then our brochure that is in, we have 30 of those brochures in the kits that we send out and the brochure has, you know, pages upon pages of the different treatment options, pros and cons.

So, gosh, you know, there's so many there. I mean, you can go convenience, you can go efficacy, duration, safety, affordability, access, almost like which one do you want, and also unfortunately it's not a soundbite. You have to think about what focal area is hyperhidrosis. So there are different treatment options available, available for different focal areas.

If you'd like, I will say that we did find in the research study that we published many years ago that the two treatments that are most often prescribed by clinicians are the two treatments with the lowest level of satisfaction. So the two treatments that are most often prescribed by clinicians are prescription antiperspirants, specifically Drysol, and the oral medications like Robinul or glycopyrrolate.

And those two have the lowest levels of satisfaction. Why? Because of side effects. So it's not because of them being effective or not. It's because of side effects. So when we think that's, so sometimes in a decision tree, you think, you know, the problem with Drysol isn't that it's not effective, it's that it's so incredibly painful to use. The problem with anti-cholinergic stuff it's just that you're completely dried out.

Amanda: So both of them have like a pro and con pairing then. And now switching gears a little bit, we're still on the treatment side, focusing on tap water iontophoresis, such as Dermadry, as a treatment option. What are your thoughts on that?

Lisa: So when we have attended. Conferences for the day when we could do that. So say we're at the society for dermatology position assistance, for example, or the gerontology nursing association or Canadian derm association and their folks come up to us. We always get sworn to, because we're you know, you're getting the holistic approach to a condition.

So it's, everybody comes to us for answers and what's new. So what I, a lot of times folks don't know about iontophoresis because well, for a lot of reasons, you know, it's been around forever, but as far as long as it has been in use in clinical practice, there is not as much clinical data that's been published, as you see in other treatment options.

So a lot of medical professionals get their information from their peer review journals. And, you know, they hear about other treatments in their peer reviewed journals. They hear about other treatments from the podium at the lectures, but iontophoresis,even though it's been around since the fifties as a way to deliver medicine, it just doesn't have a lot of research behind it. Like, I don't think that clinicians clearly understand the mechanism of action. So they want to know how to explain how it works to their patients. That's one of those things, if I could say, you know, I'd love to team up with you guys to get some research around “Why does iontophoresis work?” because it does work for lots and lots of patients.

Amanda: Yeah. And that's also something that we want to spread the word about for iontophoresis. It's just, we want to spread the word to the patients and also It's like you said something that is not super well-known yet, even though it's been since the fifties just it hasn't been treated the same and our goal is really to really spread the word with that.

And I think that'd be super, super cool if we could combine both worlds in that sense and see if we can find more research and databases with it.

Lisa: Right. Right. So I think that when I explain iontophoresis at the booth and I'm explaining it and I say, and also I do the same thing when I'm talking to patients, I say, think of it as physical therapy, you get out of it, what you put into it.

And if there, or working out what you name it, it's, what I love about iontophoresis is that you control it yourself and you can, you as a patient can say “this is working or this isn't working. I need to do it more often. I can back off a little bit”. I mean, we certainly have guidelines and we talk about that on our website.

You know, every other day for the first couple of weeks. And then once a week but don't forget that once a week, because otherwise you have to start all over again. Right. Yes.

Amanda: Yes. Well, we also have our treatment schedule that we always let people know. And you know, it depends, it depends on your severity as well. If some people do it three times a week, some people do it once depending if you're mild or severe. So I think that's something that we always try and incorporate is a treatment schedule.

Lisa: Yep. The other thing I like about iontophoresis is that since we know hyperhidrosis runs in families so that they can share the device.

Now that's probably not something you guys can say, but certainly, it's like a cost saving thing. If you know, I have two twin sisters who use their iontophoresis device together. The other thing is I feel like they last a long time. , the good ones do at least, I mean, I, I'm not talking about the battery operated ones that are, that people see online, or certainly I'm not, I don't consider the ones that people I see. I've heard about YouTube, where they make their own, I would never recommend a medical device being made. So there's, there's more to it than pie plates. So the other thing I like about iontophoresis is that, it seems to me very economical and.it can be a little bit of an uphill battle to get insurance to cover it. And I think that that would also be helped if there were more published and more recent publications about the use of it. So I think you could probably kill two birds with one stone. You increased clinician awareness and you would increase the support from insurance companies too.

Amanda: That is actually something that we are working on, and that is a long-term goal for us. So hopefully we'll climb the ladder and get there. Yeah. Well, we can help in that regard because we're, I'm sure you have too, but we have lots of patients who love to be part of the clinical trial.

Amanda: Oh, good to know! When was actually the first time that you heard about Dermadry, for example, as an iontophoresis option.

Lisa: So we've known about iontophoresis, we at the international hyperhidrosis society, we've known about iontophoresis since the beginning of our inception. We always had included it as a treatment option when we do our CME.

If you've seen the video of our physician education courses and we've run that education course all around the world. And to be clear, we can only do this when people support us because we're not, we don't have anything to quote unquote sell. We're not selling iontophoresis devices, you know, we’re selling support and care and teaching.

So when we are able to get the support, we go and teach and we even have clinicians put their hands in the iontophoresis device and test it out. A number of different devices all set up so they can compare and contrast the different, the different brands. So that's really, really important to us. And we've known about them since the beginning and you guys are relatively new to us and we're glad you're on board and thank you for supporting us, so great. You know, it's really needed. We can't do it without you.

Amanda: And thank you for supporting us as well. And like I said, coming on board with us and spreading the word and educating the ones who do suffer already from hyperhidrosis and also spreading the word for the ones that are unfamiliar with it.

Right. Going into actually sticking with the iontophoresis treatment, in your experience, who do you believe, I know we touched upon a little bit, but who would be the ideal patient for iontophoresis?

Lisa: I think the ideal patient for iontophoresis treatment would be someone with palmar, plantar, hyperhidrosis, so hands and feet in our experience that seems to be the most efficacious and easiest to do and all that. I think honestly, I think teens would be fantastic and adolescents, and it's probably surprising you that I say that. And the reason why I am is because other treatment options I think are, might have a side effect that because of hands and feet, palmoplantar hyperhidrosis, they're not able to participate in sports. So it would be a good world. If we were able to let these athletes and scholars participate more fully and they wouldn't have to worry about side effects because iontophoresis is virtually side effect free, unless you really don't listen to the instructions at all.

It's pretty easy to negate anything that could possibly happen. Like a little bit of you know soreness on your skin at the waterline. That's really easy to negate. So I think that, especially in, so say for, you know, a football player, well we don't want them to take oral medications because they could easily get overheated out on the field.

So having them at home watching one TV show and they get their treatments done, it'd be a piece of cake. And certainly that's easier than a professional who travels a lot because lugging the device along with them is a bit cumbersome. We've had, we've had some folks have trouble getting it through, back in the day when we used to fly and yeah getting through the security is a little dicey.

Amanda: Yeah, that's something that also was brought up with us as well. But we also wanted to speak about what are the misconceptions when it comes to iontophoresis treatment?

Lisa: So some people say to me, “I've tried everything”, I'll get emails like “please help me, please help me I've tried everything”. And the first thing is like, okay, let's, let's back up for a minute. I mean, nobody's ever really tried everything and in each case, there's a better way to do it, each case, including iontophoresis. So, in iontophoresis: what device did you use? How often did you use it? What kind of water did you use? Did you add any medications to it?, and these are all steps along the way. So you have to make sure you have the right device and are using the right regimen. And then if you're doing both of those things, then maybe you need to amp it up a little bit by adding some anticholinergics to the wall.

Amanda: That's actually all really good points. And what are the common resurfaced questions that come about it?

Lisa: Commonly asked questions about iontophoresis? “How do you say it?” People ask me all the time. “How do you say it?” They're like “I tried that electric shock therapy thing”. We need to come up with a new word.

What else do they ask me? Like, well, you know, they get afraid. Like, “am I going to get shocked”?

Amanda: And I think that's also something that kind of frightens people and it's really something that we're trying to educate people and saying that no, it's very low, low dosage. It's not, it's something that, you know, I've done it before as well and I have mild on my palms, I'm very sweaty on my palms. So even I was a little bit afraid at the beginning, you know, and you have to just go gently and follow the instructions. And like you said, it's something that you have to really read through and take your time and process with it.

Lisa: Right, right. Yeah, it’s a medical device. We always ask physicians to have one in their office to kind of coach, but I know that's a tall ask because the doctor's offices are always so jammed with devices and so forth. And, you know, I understand that, that they're not making millions on it, it's not like a cosmetic procedure. So we always try to make it as easy as possible for a clinician to provide care, which is why we love the kits. Because even in those kits, we also, I should have gone into it too, we have a welcome letter that we give them to send to their patients. We also have a questionnaire to help them go through and for the patients to go through their hyperhidrosis history. I think the only way that we were able to develop that is by being in this space for so long.

Amanda: Yeah. And that's something also that was brought up with us, we're also trying to educate even practitioners, we've done these tutorials or training, well now with COVID it's obviously virtual training and teaching them the procedure, if they would like to know more, if there's any questions that they may have or questions that the patient may ask. So that's something that we're also trying to develop as well, always linking back with spreading the awareness, but also educating them on the procedures and step-by-step.

Lisa: When we used to have our in-person masterclass, even as recently as 2019, we had it at George Washington University where we had the, and that's where you'll see the video of us there doing it. You know, for everyone who was there, they all, like I said, hands in iontophoresis and then they also, some of them right then and there ordered a device, which was great. But also to be known in the clinician finder on sweathelp.org/search, if you search for a clinician who is IHHS educated, that means that they're familiar with iontophoresis because they were in our class.

So that's kind of a shortcut to know that you'll see a clinician who is familiar with iontophoresis and they won't ask you, how do you say that? What is that? Well, it's important that they write a prescription for it too.

Amanda: Yes. And actually that's a great point because not many people know about that code.

Usually people focus on the MD or the derm or so it's really important that they could also, the viewers could actually look at that code as well.

Lisa: Right. Right. And we have iontophoresis insurance help. It’s there also, so if you ever have something that you know of for Canada, I don't know if it even matters there or in the US, we are happy to collaborate and put up, you know, share it, share the information. In 2021, we hope that we'll have an online masterclass where you'll see. Iontophoresis has a whole module.

Amanda: That's amazing and good to share, and we'll definitely be sharing that as well. Linking back now going back to when we were talking about the treatment schedule, What are the effects when it comes to maintaining a proper iontophoresis treatment schedule, we know that it is difficult, right, Like we mentioned before, but what can you give us tips and tricks for the viewers?

Lisa: So, you know, everybody is different. Every body is different. So their reaction to it is different. Some people might need three treatments a week to get started. Other people only two, some people might get skin irritation.. So I'm sure on your website, you have tips and tricks for your specific device.

Because I know different devices are different, the other thing is working with a very astute clinician is really important like Dr. Glazer in St. Louis is just amazing for iontophoresis here in the US and she has great tips that she has learned. She is a constant student, she's wonderful that way. So, and then also, you know, you want to just watch when you get the effect that you want of dryness, then you can back off for a little bit, but never forgetting to repeat the treatment. What is it for your device? Do you say once a week to repeat the treatment or

Amanda: three to five times, depending on the severity. However, like for myself, I've done it once a week and I was clear for two months, so it really depends on your severity and also the voltage that you're using.

Lisa: Right, right. And does it also depend on the minerals in the water?

Amanda:So we are tap water. , so we're always recommending tap water.

However, I know that there, it could, that could also play an effect on it. However, we haven't had any moments with that yet. It's mainly the voltage.

Lisa: It would be very interesting to do a study on so where I live it's well water. So it has a lot of minerals and it's very hard water. And I would love to know if that is a difference or if somebody who has well water should use bottled water, for example or distilled water. So that would be super cool too, to see if there's a difference in the water.

Amanda: I think that would actually be a really, really cool study that maybe we could work on together. I think that'd be awesome to see what would work best and see the results from them.

Lisa: And you know, what I love about it too, is that if we're talking about the rural community, that's where we know it's really hard to get healthcare. And iontophoresis would be ideal in rural communities because at once and you are at home on your own, you can do it.

You don't have to drive those three hours to go see a dermatologist for treatment. So, yeah, and I don't think people, I don't think researchers look enough at what's going on in rural communities as far as health and wellness. So I know there's hyperhidrosis folks that are listening here and the rural communities, I'm with you.

And I think if we could work together on getting that information out there, that would be really powerful and shine a light on something that no one's thought of.

Amanda: Yes. And I think that's actually a great approach to a study. And I think for the future, actually, I think that would be a good aspect to lean on. Going into now, I know we mentioned a little bit about insurances. How do you think we can make some insurance could refund the iontophoresis medical device? And are there any political battles going into this process as well?

Lisa: So it seems to me when we get most of the pushback and you probably need to ask the clinics themselves, but when we get most of the pushback on iontophoresis, it's usually because they don't have enough research to support the decision, the physicians or the clinicians recommendations.

So back to their research side of things, I think that that would be a big help. Other than that, you know, it would be great if we knew we at the international hyperhidrosis society had tips and tricks that other folks have found out there. We used to publish a list of insurance carriers who have, and their policies on hyperhidrosis.

So that was really good. And then just recently I've worked with, AT&T, to bring, you knew about this, to bring forward hyperhidrosis as a condition. So it came forward as a disability in AT&T and they provide accommodations and I help them determine what these accommodations are, because if you don't have hyperhidrosis, you can't even, you don't know how to help someone who does exactly.

Right. I mean, I don't have it, but 17 years, I guess I'm an honorary hyperhidrosis sufferer. So yeah, so we have, and then AT&T also looked into the coverage that their employees around the world have and in the US. And they tried to foster that. So I think that they cover Miradry now, which I'm trying to get a full grasp on. But what I would hope is that they also would cover iontophoresis devices and other treatments.

Amanda: I think that'd be actually a great option and that's really what we're trying as well. And our goal is really to get there. I know there's a lot of people who are suffering that really want it to be insured and that's something that we are trying to work on.

Lisa: Yeah. But even if I know insurance is tough. I mean, maybe you guys can even help in that regard as far as doing payment plans and so forth. We know a lot of cosmetic companies do that too. Different and also in your, on our website. And I think there was a coupon code there and so forth, but yeah, if you looked at the long-term cost of hyperhidrosis and looked at the different treatment costs, you know, when is the break-even for your treatment versus other ones, you know, and I think it's, I think your treatment is fiscally very responsible if it works. And I feel like the folks who use it can have a great option at their fingertips.

Amanda: Yes. So hopefully a step one step at a time and we'll eventually get there for the near future. And hopefully we can do that some way together. I think that would be a great way to build that for them.And like, we were mentioning a little bit about a little bit before, excessive sweating/hyperhidrosis is considered a taboo subject. Not a lot of people feel comfortable talking about it, not even with their doctors. How do individuals approach you towards this topic? Are they very timid and shy? Is there anything that you let them know? How do you calm them down? Are there things that you could let us know on what you do?

Lisa: So when people approach me about hyperhidrosis, whether in-person or online, they are always really emotional. So they could be jubilant. I've had, I literally had someone like run across a hotel lobby and hug me because I gave him my card. I knew he had hyperhidrosis and we were just chatting and he walked away and looked at the card and was like, oh my gosh, that's Lisa Pieretti?! And he came running back and he's like, I've had it my whole life, my kids have it. So he was jubilant.

We're still friends and I'm still helping him in his journey. And then I have other folks who are really hit hard by it and they are devastated by the impact it's had on their life and some, you know, consider self-harm and suicide. So it's the gamut. So folks can be jubilant. Everyone's glad that they find the IHhS that hands down always happens, which is the joy of my work.

But at the same time, it's, you know it's finding the International Hyperhidrosis Society is like getting on a Speedway to healing in hyperhidrosis. So they're always so happy. They got there. And at the same time, it's like, okay, let's get going. Let's get to work. So I don't, usually, it's not difficult for me to, I don't have to calm them down. I'm with them on the ride. Yeah.

Amanda: And I think that's beautifully said in a sense of you're enjoying the moments that they're so appreciative and in the moment and the ones that are going through a difficult time, you're there to understand and help and guide them to what they need. And there are a lot of patients, even with us that explain to us their anxieties and some of them, their depression.

And that's why it's really important to even try and speak up a little bit, either with a physician, a psychologist, family, a friend, a doctor, someone that you kind of could lean on and just kind of explain a little bit because sometimes people go into their little cocoon and they don't want to get out.

Lisa: For sure.

And when you're dealing with a stigmatized disease, like we are, it's shame-based. And the reason why it's shame-based is because those who don't have hyperhidrosis see when someone has it, and they're like, “well, just stop sweating, just stop doing what you’re doing”. And you can't, you can't do that.

So then you turn inward and especially, remember, everybody gets this in the hyperhidrosis community, it starts when they're wee. So when you're just a little kid, you're powerless as it is, and then you're powerless to stop this thing that is so humiliating. That is what creates this shame-based condition.

And what happens from there? You don't want to talk about it to anyone. You hide it, you go into hiding and it’s this loop, and our job is to break the loop. We have to, we have to break this cycle of shame. So that's why we educate the public. And then we break the cycle of going and talking to a clinician and then getting dismissed and getting turned away.

That's like, when you finally have the courage to ask someone and they say, “I don't know what you're talking about”, or, “oh, you’ll grow out of it”. You know, 50% of people with hyperhidrosis wait 10 years or more before they ever ask for care and many never do many, never do. So our job is to, we have to bring this together.

One of the most important things I think is to go to a clinician who knows what hyperhidrosis is. Otherwise, if they don't know, then they're going to reaffirm the negative connotations that you have, that something is “wrong” with you.

Amanda: And that's one of the founders of Dermadry—that's how Dermadry came about. He was so shy and I know you kind of mentioned it a little bit before, but he was actually trying to make an at-home device. And he was, he was so embarrassed. He was timid, shy, and finally, creating something that he was able to share his experience with, open them up a little bit, and he feels a lot more comfortable.

Now, obviously it's been some years, but it's something that at least he felt happy about. And I think that individuals just need to find that little, that one person to guide them on that proper path and, and it comes over to a full effect.

Lisa: Yep. That's true. And also, we should say that, when someone, when you find a treatment that works and then sometimes, it does not stop working, but it's not as efficacious as it used to be, you have to keep on revisiting and sometimes combining treatments. Like people combine Botox and Secret clinical strength, for example, and it can help, the two together could work beautifully. So things like, and like we talked about combining iontophoresis with anticholinergic medication in the water bath combine, it's just, it's a dynamic process. You need to find a clinician who will work through it with you so that you can approach it holistically.

Amanda: Switching gears a little bit again, in your experience as the executive director and co-founder of the International Hyperhidrosis Society, what type of hyperhidrosis seems to bother the most people? There are different areas, however, what do you feel affects the people the most?

Lisa: So it's not even what I feel, it’s what research says. So if we look at what's been published in manuscripts that palmar hyperhidrosis has the highest impact on quality of life, any dermatologic condition full stop. That includes in-patient psoriasis, that includes skin cancer.

So palmar hyperhidrosis, published, fully proven, has the biggest impact and why? Think about it for a second, and you probably already know this, but this is something that we, I tell the FDA, I tell clinicians, because they need to hear that this is the one dermatologic condition that has a functional impairment.

So I have sweaty palms, I can't write, I can't hold the steering wheel, I can't get fingerprinted for my teaching job or for my nurse job. So there's so many impacts that it has on your life overall. It's not just uncomfortable or, you know, it's much, it's so much more than that. And I think that's why it puts it in another class, palmar hyperhidrosis, it's in a class all by itself, I think.

Amanda: And the same thing, even writing sometimes I know, you know, when you're writing and then, you know, you're sweating and your ink is kind of leaking through and you're like, oh boy

Lisa: Right, you’re smudging all the paper, and destroying all your keyboards, you can't use your phone. I would say this too, I was recently at a big conference and I was explaining how you can't even use your cell phone. So in case of emergency you can’t dial 911 because your fingers are sweating. It’s really bad. So I think it's an urgent need to take care of people with. palmar hyperhidrosis, remembering to most folks with palmar hyperhidrosis, most of these kids and adolescents, there's nothing else wrong. There's nothing else. That's a barrier to their realizing their potential and their greatness.

Amanda: What are your hopes for hyperhidrosis when it comes to research and development, particularly regarding iontophoresis treatment?

Lisa: Right now we're doing some very impressive research on the impact of hyperhidrosis on the pediatric population, it’s never been done before.

So you'll see in the research literature that I’m one of the authors and that I designed the research. So you'll see that being published quite a bit. And it's getting a ton of attention because the impact is far greater than we thought. The other thing that we're finding out is that night sweating is a big factor for people, and it's getting the folks a little bit confused, which is why, please, please, please tell people to look at primary versus secondary hyperhidrosis. Understanding of the two types is really important for the treatment journey, because there are two divergent paths. So what additional research would I like?

We have a proposal that we are hoping to do, which is understanding the impact of and the life experience of people who are not white, who have hyperhidrosis. So, like for the black and brown population, having hyperhidrosis, we have a hypothesis that there's a different journey.

And we want to research that and we want to address that. So that the journey of the black and brown hyperhidrosis suffer is made smoother. And that is something we want to do in 2021. And hopefully you guys will support that, that research project.

Amanda: Yes. And I think that's actually very interesting and there was, I know research done and I believe in the Asian culture. However, I think it'd be super interesting to look at that as well and see how we could help and support.

Lisa: right. And including too, like we already have the skin of color because. I might have the name wrong, but it's a dermatologic society specifically for skin of color and they support us in this research. So they'll be partnering with us and it will be completely driven by nonwhite people. So those folks will drive the conversation and drive the solutions for it as well. And then together, we will implement it.

Amanda: It's going to be great. Before we end off, do you have any final thoughts you would like to share on your experience, with any hyperhidrosis patients, any stories, anything that you want to throw to the viewers and help spread the word?

Lisa: Well I mean, I hope everyone subscribes to our newsletter of course, because we have such great information coming out all the time. We have clinical studies that we and other research that we ask for folks to be involved in the research that you and I are talking about can only happen if our communities steps up.

I also think that the International Hyperhidrosis Society is an independent, unbiased charity. And as such, we rely on donations and support from the community. And there are so many ways to support it from employee programs. I challenge every company out there who makes, including yours, who makes something for hyperhidrosis to have an employee matching, so if an employee gives a dollar to the International Hyperhidrosis Society that the company will too.

I think that is like a perfect philanthropy. And why not? Why not? Like it kind of like, put your money where your mouth is. So I think that would be great. And the other thing is when employees talk to their employer and their HR about matching they're raising awareness in the company and HR will then understand what hyperhidrosis is. Imagine if HR got smarter about it..

Amanda: Yes. There are a few actually here in Montreal that we've been speaking with in different industries. And there's one that actually works in HR and who does suffer from hyperhidrosis he is actually, we're trying to work on something with him, seeing how we could spread the word. And there are people that need to be aware and take care of the employees, I think is something that is in the works and that will come from the future.

Lisa: Maybe we can team up on that too. You don't need to reinvent the wheel—if there's something I can contribute, like the accommodation mapping that I gave to AT&T maybe that can help too.

Amanda: That's amazing. I'm really looking forward to all these future projects that we could work on and how we could spread the word. And thank you very much for coming on today and speaking to the viewers, it was a real pleasure meeting you and pleasure speaking with the viewers and hopefully we can help spread the word.

Lisa: Thank you. You are, you are! Thank you so much. I really appreciate it. Thanks for having me on.

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