1 00:00:02,120 --> 00:00:06,560 Speaker 1: Welcome to Our Skin, a personal discovery podcast. I'm your host, 2 00:00:06,640 --> 00:00:09,000 Speaker 1: Holly Fry, and it is wonderful to have you here 3 00:00:09,039 --> 00:00:12,080 Speaker 1: with us. Connection is what this show is all about, 4 00:00:12,400 --> 00:00:16,040 Speaker 1: specifically connecting about things that we are sometimes afraid to 5 00:00:16,079 --> 00:00:18,840 Speaker 1: talk about. Today, we're going to be exploring the ups 6 00:00:18,880 --> 00:00:22,560 Speaker 1: and downs, past and present, personal and universal troubles we 7 00:00:22,640 --> 00:00:26,720 Speaker 1: have with our skin. Our skin is our most visible organ. 8 00:00:27,000 --> 00:00:29,960 Speaker 1: What happens on our skin affects the rest of our lives, 9 00:00:30,280 --> 00:00:34,080 Speaker 1: especially when dealing with a chronic condition. Getting diagnosed with 10 00:00:34,120 --> 00:00:37,600 Speaker 1: one of these, like psoriasis, can be overwhelming, but you're 11 00:00:37,640 --> 00:00:42,200 Speaker 1: not alone. Each episode features a personal story of resilience 12 00:00:42,320 --> 00:00:45,360 Speaker 1: and grace, but our personal stories are threads in a 13 00:00:45,440 --> 00:00:48,479 Speaker 1: larger tapestry, and there are lessons for us in the 14 00:00:48,520 --> 00:00:51,239 Speaker 1: history of how we treat our skin and the progress 15 00:00:51,280 --> 00:00:55,640 Speaker 1: we've made together. Caring for our skin is caring for ourselves. 16 00:00:56,000 --> 00:00:59,400 Speaker 1: Whether you're seeking inspiration for your own journey or curious 17 00:00:59,400 --> 00:01:03,440 Speaker 1: about the history of our skin, you'll find empathetic, transformative 18 00:01:03,480 --> 00:01:10,600 Speaker 1: conversations here on Our Skin. Our guest today is Holly Dylan. 19 00:01:10,840 --> 00:01:13,560 Speaker 1: She is an executive producer with a rich background in 20 00:01:13,600 --> 00:01:17,679 Speaker 1: both Hollywood and activism, and she knows how unforgiving the 21 00:01:17,720 --> 00:01:21,280 Speaker 1: industry can be for people with visible skin conditions. She 22 00:01:21,440 --> 00:01:24,959 Speaker 1: was diagnosed with siriasis at just fourteen years old, and 23 00:01:25,040 --> 00:01:27,760 Speaker 1: at twenty she was told by a dermatologist that there 24 00:01:27,800 --> 00:01:31,400 Speaker 1: were no treatments available to her, which would of course 25 00:01:31,440 --> 00:01:34,679 Speaker 1: be devastating as her symptoms were really debilitating, and of 26 00:01:34,720 --> 00:01:39,480 Speaker 1: course siriasis is a lifelong condition, so Holly set out 27 00:01:39,480 --> 00:01:43,560 Speaker 1: to find answers and community on her own terms. For years, 28 00:01:43,720 --> 00:01:47,000 Speaker 1: Dylan chronicled her experiences on social media by using the 29 00:01:47,040 --> 00:01:50,760 Speaker 1: hashtag get your Skin Out, with the hope of connecting 30 00:01:50,800 --> 00:01:54,600 Speaker 1: with others facing similar conditions. Now Get your Skin Out 31 00:01:54,600 --> 00:01:57,800 Speaker 1: has grown into a campaign and a support network, followed 32 00:01:57,840 --> 00:02:01,680 Speaker 1: by thousands that share photos and tis and uplifting communication 33 00:02:02,200 --> 00:02:07,520 Speaker 1: about things like sariasis, viteligo, stretch marks, hyper pigmentation, and scars. 34 00:02:08,320 --> 00:02:12,799 Speaker 1: Holly emphasizes the person behind the condition. When we step 35 00:02:12,840 --> 00:02:15,239 Speaker 1: back into the history of skin today, we're gonna try 36 00:02:15,280 --> 00:02:18,080 Speaker 1: to get to the heart of what two particular people 37 00:02:18,160 --> 00:02:21,440 Speaker 1: went through in their times. The writings of Benjamin Franklin 38 00:02:21,520 --> 00:02:25,639 Speaker 1: and Victorian painter, poet and model Elizabeth Siddel will show 39 00:02:25,720 --> 00:02:28,640 Speaker 1: us that Siasi's stories have an awful lot in common, 40 00:02:29,120 --> 00:02:32,480 Speaker 1: even from the distance of hundreds of years. What we 41 00:02:32,560 --> 00:02:35,120 Speaker 1: have in common builds community, and that is what is 42 00:02:35,200 --> 00:02:39,120 Speaker 1: important to Holly. She has a superpower for creating impactful 43 00:02:39,160 --> 00:02:43,959 Speaker 1: stories that drive action and change. Holly, Welcome to our skin. 44 00:02:44,200 --> 00:02:46,440 Speaker 1: I am so glad you are here with us today. 45 00:02:46,600 --> 00:02:48,600 Speaker 2: Oh my god, thank you so much for having me 46 00:02:48,680 --> 00:02:51,320 Speaker 2: Holley on Honor to speak to you. And I'm so 47 00:02:51,400 --> 00:02:54,000 Speaker 2: excited to get the history behind this. It is something 48 00:02:54,080 --> 00:02:57,240 Speaker 2: that I am yet to dive into. So let's do 49 00:02:57,320 --> 00:02:57,840 Speaker 2: it today. 50 00:02:58,400 --> 00:03:00,760 Speaker 1: We'll brace for impact. So I want to ask you 51 00:03:00,800 --> 00:03:03,760 Speaker 1: some questions. I want to know how this all started. 52 00:03:03,840 --> 00:03:07,760 Speaker 1: Because you were very very young when your soriasis symptoms emerged. 53 00:03:08,440 --> 00:03:11,680 Speaker 1: What did you first notice changing on your skin? And 54 00:03:11,760 --> 00:03:16,160 Speaker 1: at an age where everyone is already a little self conscious. 55 00:03:16,000 --> 00:03:19,400 Speaker 2: So I was first diagnosed with crisis and it was 56 00:03:19,440 --> 00:03:22,360 Speaker 2: actually located on the bottom of my chin. And you know, 57 00:03:22,520 --> 00:03:25,200 Speaker 2: I was fourteen at the time, so very much in 58 00:03:25,280 --> 00:03:28,920 Speaker 2: the throes of puberty. And if I'm honest, at that point, 59 00:03:28,919 --> 00:03:31,720 Speaker 2: myself or my family, or my kind of wider network 60 00:03:31,800 --> 00:03:35,200 Speaker 2: weren't really familiar with crisis. So as a self diagnosis. 61 00:03:35,240 --> 00:03:38,040 Speaker 2: We thought this was just a part of everybody's teenage 62 00:03:38,120 --> 00:03:40,320 Speaker 2: journey and I had a spot on the end of 63 00:03:40,320 --> 00:03:43,200 Speaker 2: my chin, but over a period of time, you know, 64 00:03:43,360 --> 00:03:46,600 Speaker 2: visually and physically, it felt very different, which is actually 65 00:03:46,680 --> 00:03:49,880 Speaker 2: what led me to go to my GP in the UK, 66 00:03:50,000 --> 00:03:53,240 Speaker 2: in London, and that is formally where I first got 67 00:03:53,240 --> 00:03:57,880 Speaker 2: my accurate diagnosis of crisis, and particularly gutt eight. Crisis, 68 00:03:58,240 --> 00:04:00,320 Speaker 2: which you know, twenty years on is something that I 69 00:04:00,360 --> 00:04:03,680 Speaker 2: still live with and sitting here today and speaking to you, Holly, 70 00:04:03,880 --> 00:04:06,800 Speaker 2: is all over my body, from my face, my ears, 71 00:04:06,920 --> 00:04:09,800 Speaker 2: my genitals, my back, my legs, you name it. I 72 00:04:09,880 --> 00:04:11,880 Speaker 2: am truly covered in crisis. 73 00:04:12,720 --> 00:04:15,840 Speaker 1: Psiasis presents with a lot of different symptoms, and one 74 00:04:15,880 --> 00:04:18,440 Speaker 1: that a lot of people experience is itching, but that 75 00:04:18,600 --> 00:04:20,960 Speaker 1: is not everyone's experience, right. 76 00:04:21,400 --> 00:04:22,480 Speaker 3: I'm glad you brought that up. 77 00:04:22,520 --> 00:04:25,240 Speaker 2: I think the common symptom that people think that we 78 00:04:25,320 --> 00:04:28,839 Speaker 2: live with is itchy, flaky, dry skin. But for me, 79 00:04:29,000 --> 00:04:32,360 Speaker 2: for example, my skin doesn't actually itch that much, which 80 00:04:32,360 --> 00:04:35,320 Speaker 2: if you were to look at me, might sound absolutely crazy, 81 00:04:35,800 --> 00:04:38,280 Speaker 2: but for me, mine actually leads more on the dry 82 00:04:38,360 --> 00:04:40,679 Speaker 2: side and the flaky side, but it does not present 83 00:04:40,760 --> 00:04:42,520 Speaker 2: as an itch. But I know for many people that 84 00:04:42,600 --> 00:04:44,920 Speaker 2: I do speak to through Get your Skin Out, that 85 00:04:45,000 --> 00:04:48,359 Speaker 2: itchiness is absolutely a common factor. And you know, I 86 00:04:48,400 --> 00:04:50,359 Speaker 2: think really needs to be linked to the kind of 87 00:04:50,800 --> 00:04:54,279 Speaker 2: mental and physical aspect of living with autoimmune and skin 88 00:04:54,320 --> 00:04:58,800 Speaker 2: condition likesorisis that having that constant chronic itch and pain 89 00:04:59,000 --> 00:05:02,359 Speaker 2: and dryness is something that people really struggle with, and 90 00:05:02,400 --> 00:05:06,120 Speaker 2: You're right, is not acknowledged enough for people's everyday lived experience. 91 00:05:07,040 --> 00:05:09,359 Speaker 1: I'm really glad that you moved into this space of 92 00:05:09,440 --> 00:05:12,440 Speaker 1: lived experience because I know for a lot of people, 93 00:05:13,000 --> 00:05:17,120 Speaker 1: soiasis kind of keeps them from living. They don't get 94 00:05:17,120 --> 00:05:18,800 Speaker 1: out there and do it. And I think people that 95 00:05:18,920 --> 00:05:23,000 Speaker 1: don't live with a chronic skin condition probably aren't really 96 00:05:23,040 --> 00:05:27,760 Speaker 1: cognizant of just how debilitating soriasis symptoms can be. They're like, oh, 97 00:05:27,800 --> 00:05:30,040 Speaker 1: you're itchy, I've got itches before, but that. 98 00:05:30,120 --> 00:05:30,800 Speaker 3: Is not it. 99 00:05:31,279 --> 00:05:34,560 Speaker 1: Can you talk a little bit about that disconnect between 100 00:05:34,760 --> 00:05:37,280 Speaker 1: people that live with these conditions and people that do not. 101 00:05:38,000 --> 00:05:40,320 Speaker 2: I think you said it right there that the everyday, 102 00:05:40,480 --> 00:05:43,240 Speaker 2: normal lived experience that somebody who is not living with 103 00:05:43,279 --> 00:05:45,800 Speaker 2: a skin condition has no context for us that do. 104 00:05:45,920 --> 00:05:47,880 Speaker 3: And that isn't to pit each other against each other. 105 00:05:47,920 --> 00:05:51,440 Speaker 2: It's actually to invite people in for sympathy and understanding 106 00:05:51,440 --> 00:05:54,839 Speaker 2: where we're coming from. So for example, an everyday task 107 00:05:55,160 --> 00:05:58,520 Speaker 2: like going to get your food shop. Maybe you're a swimmer, 108 00:05:58,600 --> 00:06:01,000 Speaker 2: I swim every day, facts size and my kind of 109 00:06:01,040 --> 00:06:04,279 Speaker 2: mental health, just wearing maybe a short sleeve top in 110 00:06:04,279 --> 00:06:06,159 Speaker 2: the summer or a pair of shorts. You know, these 111 00:06:06,200 --> 00:06:09,920 Speaker 2: things that I think on an everyday normal person might 112 00:06:09,960 --> 00:06:12,800 Speaker 2: not actually think is going to be a huge step, 113 00:06:12,880 --> 00:06:15,719 Speaker 2: but for someone living with a visible skin condition like 114 00:06:15,760 --> 00:06:19,040 Speaker 2: me with psoriasis, it is, and it can feel very 115 00:06:19,080 --> 00:06:22,160 Speaker 2: debilitating because what happens when you take those steps in 116 00:06:22,240 --> 00:06:26,240 Speaker 2: these normal, everyday routines is you are subject to people's perception, 117 00:06:26,720 --> 00:06:30,440 Speaker 2: and that perception is often negative. It is often coming 118 00:06:30,440 --> 00:06:32,680 Speaker 2: with a lot of shame, and you know, for us 119 00:06:32,760 --> 00:06:35,800 Speaker 2: living with it, that can feel like we don't have 120 00:06:35,839 --> 00:06:39,279 Speaker 2: a place, and that, unfortunately is the kind of wider 121 00:06:39,360 --> 00:06:42,839 Speaker 2: societal impact in and around what we should look like, 122 00:06:42,920 --> 00:06:45,599 Speaker 2: what our bodies should be that has really kind of 123 00:06:45,640 --> 00:06:48,080 Speaker 2: we've heard this and other kind of body positive movements, 124 00:06:48,080 --> 00:06:50,920 Speaker 2: but is absolutely a part of our every day living 125 00:06:50,960 --> 00:06:52,760 Speaker 2: with a visible skin condition as well. 126 00:06:53,680 --> 00:06:57,120 Speaker 1: Now, I love that you invite people to get in 127 00:06:57,160 --> 00:07:00,479 Speaker 1: the conversation and ask questions and learn. But I wonder 128 00:07:00,520 --> 00:07:04,840 Speaker 1: if you've ever had someone who pushes back and minimizes 129 00:07:04,880 --> 00:07:06,480 Speaker 1: when you try to explain what's going on. 130 00:07:06,960 --> 00:07:09,440 Speaker 2: Oh absolutely, I mean I think, as I mentioned, I 131 00:07:09,480 --> 00:07:12,040 Speaker 2: swim every day, so I kind of always have this 132 00:07:12,240 --> 00:07:15,160 Speaker 2: ready to be braced fight or flight response where I 133 00:07:15,240 --> 00:07:16,960 Speaker 2: know someone is either going to come up to me 134 00:07:17,080 --> 00:07:20,000 Speaker 2: and ask an unsolicited question or I'm going to get 135 00:07:20,000 --> 00:07:23,040 Speaker 2: the megastare down from you know, everybody that's already swimming. 136 00:07:23,280 --> 00:07:25,280 Speaker 2: The position that I have taken, and this is very 137 00:07:25,320 --> 00:07:27,240 Speaker 2: much echoed in the person that who I am and 138 00:07:27,280 --> 00:07:33,200 Speaker 2: through the campaign is really taking an educator active response 139 00:07:33,600 --> 00:07:37,200 Speaker 2: to educate people and invite them in and instead of 140 00:07:37,240 --> 00:07:40,280 Speaker 2: meeting them with I guess, aggression or mass frustration, which 141 00:07:40,320 --> 00:07:44,520 Speaker 2: although I feel it, I contain, I contain myself. 142 00:07:44,520 --> 00:07:45,760 Speaker 3: I take a deep breath. 143 00:07:45,880 --> 00:07:49,040 Speaker 2: So yes, there's pushback, but for me, I try and 144 00:07:49,120 --> 00:07:53,760 Speaker 2: meet it with accurate information, educational as a response and 145 00:07:53,880 --> 00:07:57,040 Speaker 2: hoping that that person would leave with a more informed 146 00:07:57,480 --> 00:08:00,960 Speaker 2: understanding view of a skin condition like sir, and in 147 00:08:01,000 --> 00:08:05,520 Speaker 2: the meantime reshape or repivot their perceptions of what actually 148 00:08:05,520 --> 00:08:07,120 Speaker 2: living with a skin condition is like. 149 00:08:08,040 --> 00:08:10,520 Speaker 1: I want to talk a little bit more about the 150 00:08:10,560 --> 00:08:13,240 Speaker 1: early days of your diagnosis, because here you are as 151 00:08:13,280 --> 00:08:16,120 Speaker 1: an adolescent with this thing that you know is not 152 00:08:16,440 --> 00:08:20,080 Speaker 1: just a pimple or something going on. Did it help 153 00:08:20,280 --> 00:08:23,960 Speaker 1: once you actually had a doctor's diagnosis to contextualize what 154 00:08:24,120 --> 00:08:25,840 Speaker 1: was going on? Like, did that help you as a 155 00:08:25,840 --> 00:08:28,520 Speaker 1: fourteen year old or was it all just this sucks? 156 00:08:28,520 --> 00:08:29,680 Speaker 1: There's no way around. 157 00:08:29,440 --> 00:08:32,880 Speaker 2: It getting a diagnosis at fourteen. I think whilst I 158 00:08:32,880 --> 00:08:35,719 Speaker 2: couldn't really register the wider impact that living with a 159 00:08:35,800 --> 00:08:38,200 Speaker 2: chronic condition would have on my life, I think the 160 00:08:38,280 --> 00:08:41,280 Speaker 2: first step always is understanding actually what the hell it is? 161 00:08:41,360 --> 00:08:45,240 Speaker 2: So do you actually have a qualified doctor be able 162 00:08:45,280 --> 00:08:48,600 Speaker 2: to distinguish and say this isn't just you know, pubescent acne, 163 00:08:48,960 --> 00:08:53,360 Speaker 2: this is actually prisis in my case, really allowed me 164 00:08:53,640 --> 00:08:57,320 Speaker 2: to have an informed journey of how. 165 00:08:57,040 --> 00:08:58,600 Speaker 3: I could live with a skin condition. 166 00:08:58,840 --> 00:09:01,600 Speaker 2: So it's very important to get your diagnosis if you 167 00:09:01,679 --> 00:09:04,800 Speaker 2: have access to that healthcare system. But you know, social 168 00:09:04,840 --> 00:09:07,360 Speaker 2: media when I started Get your Skin Out and now 169 00:09:07,400 --> 00:09:10,640 Speaker 2: has also become a wonderful route for people to have 170 00:09:11,120 --> 00:09:15,440 Speaker 2: visual representation and identification to go, hey, I think that 171 00:09:15,480 --> 00:09:18,440 Speaker 2: looks like me. I haven't actually gone to the doctors yet. 172 00:09:18,520 --> 00:09:21,040 Speaker 2: I haven't had this access, but I'm going to take 173 00:09:21,080 --> 00:09:23,720 Speaker 2: these images of all of these people and say, I 174 00:09:23,760 --> 00:09:24,680 Speaker 2: think I have this thing. 175 00:09:24,720 --> 00:09:26,640 Speaker 3: What do you think, doctor? So I think yes. 176 00:09:26,720 --> 00:09:30,599 Speaker 2: Step one if you can is get an accurate diagnosis 177 00:09:30,679 --> 00:09:32,480 Speaker 2: of what you are living with, so then you can 178 00:09:32,520 --> 00:09:35,280 Speaker 2: feel informed and have choices about how you live your life. 179 00:09:36,080 --> 00:09:38,720 Speaker 1: I'm so glad that you brought up social media because 180 00:09:38,800 --> 00:09:41,720 Speaker 1: community is such an important thing for people that deal 181 00:09:41,760 --> 00:09:44,880 Speaker 1: with any chronic condition, but especially something that shows up 182 00:09:44,880 --> 00:09:48,559 Speaker 1: on your skin like psoriasis, feels very isolating and sometimes 183 00:09:48,600 --> 00:09:50,600 Speaker 1: people feel like they need to hide and that there 184 00:09:50,679 --> 00:09:53,680 Speaker 1: isn't someone else to reach out to you. And this 185 00:09:53,720 --> 00:09:56,280 Speaker 1: is what brought you to the twenty twenty three campaign 186 00:09:56,400 --> 00:09:59,240 Speaker 1: Forget your Skin Out. There were no people hiding in 187 00:09:59,280 --> 00:10:03,480 Speaker 1: those pictures out there and showing off, So you really 188 00:10:03,520 --> 00:10:05,280 Speaker 1: took over in New York. Will you talk about that 189 00:10:05,360 --> 00:10:05,880 Speaker 1: a little bit? 190 00:10:06,200 --> 00:10:06,520 Speaker 3: Yeah? 191 00:10:06,600 --> 00:10:09,640 Speaker 2: Absolutely, I mean I think rewinding, you know, at fourteen 192 00:10:09,760 --> 00:10:12,520 Speaker 2: and then through that kind of doctor route, I never 193 00:10:12,600 --> 00:10:16,280 Speaker 2: met anybody with crisis. All I was shown in these 194 00:10:16,320 --> 00:10:20,040 Speaker 2: seven minute dermatology appointments were these stick figures where they'd 195 00:10:20,080 --> 00:10:21,960 Speaker 2: get out a pencil and you know kind of do 196 00:10:22,000 --> 00:10:24,280 Speaker 2: this frantic dotting and go does this look like you 197 00:10:24,360 --> 00:10:25,160 Speaker 2: with crisis? 198 00:10:25,559 --> 00:10:26,439 Speaker 3: So I think for me. 199 00:10:26,559 --> 00:10:28,280 Speaker 2: Get Your Skin Out was born out of a need, 200 00:10:28,760 --> 00:10:31,520 Speaker 2: a need to create, a need to meet people who 201 00:10:31,679 --> 00:10:35,640 Speaker 2: understood my lived experience and could really relate to me 202 00:10:35,760 --> 00:10:37,520 Speaker 2: When I said, isn't it a pain in the ass 203 00:10:37,520 --> 00:10:39,760 Speaker 2: when you shave your legs covered with crisis and then 204 00:10:39,800 --> 00:10:42,760 Speaker 2: it's a bloody massacre? Or you know, how do you 205 00:10:42,800 --> 00:10:46,640 Speaker 2: feel about being intimate with crisis or vitiligo at acne. 206 00:10:46,679 --> 00:10:49,560 Speaker 2: So I think social media at that time, which was 207 00:10:49,600 --> 00:10:51,520 Speaker 2: ten years ago now when I started Get Your Skin 208 00:10:51,559 --> 00:10:55,600 Speaker 2: Out and now has been instrumental to people living with 209 00:10:55,720 --> 00:10:59,800 Speaker 2: visible skin conditions to feel connected, to really move what 210 00:11:00,240 --> 00:11:03,160 Speaker 2: feel very isolating and as I said, have that visual 211 00:11:03,200 --> 00:11:07,360 Speaker 2: representation and identification where people can see themselves. And so 212 00:11:07,559 --> 00:11:10,960 Speaker 2: New York last year for World Crisis Day, I used 213 00:11:11,000 --> 00:11:13,840 Speaker 2: Get your Skin Out and really cast community members and 214 00:11:13,840 --> 00:11:16,760 Speaker 2: I said, I have this wonderful opportunity to put us 215 00:11:16,840 --> 00:11:18,880 Speaker 2: in the middle of New York and I'm talking from 216 00:11:19,440 --> 00:11:22,679 Speaker 2: you know, Times Square, in the middle of the theaters, all 217 00:11:22,760 --> 00:11:26,520 Speaker 2: the way to Prospect Park to Brooklyn to Chelsea. We 218 00:11:26,520 --> 00:11:30,000 Speaker 2: were everywhere, and I did a month long activation where 219 00:11:30,040 --> 00:11:32,920 Speaker 2: we took over these digital screens and I think having 220 00:11:33,440 --> 00:11:36,760 Speaker 2: us as a community, very proud, very present, owning our 221 00:11:36,760 --> 00:11:41,040 Speaker 2: bodies with our conditions, which that year was just psiasis 222 00:11:41,679 --> 00:11:44,040 Speaker 2: was very meaningful to people to know that they had 223 00:11:44,040 --> 00:11:46,800 Speaker 2: a place that they could feel seen and that we 224 00:11:46,960 --> 00:11:51,240 Speaker 2: could belong. Really and having it prominent in New York 225 00:11:51,440 --> 00:11:52,960 Speaker 2: was life changing, It really was. 226 00:11:53,920 --> 00:11:57,400 Speaker 1: That is such a huge activation that I am sure 227 00:11:58,000 --> 00:12:02,560 Speaker 1: that it brought a lot of new people to your community. 228 00:12:02,600 --> 00:12:06,920 Speaker 1: And I'm wondering if you were surprised by one the 229 00:12:06,960 --> 00:12:10,400 Speaker 1: reaction and the rush to this great community, but two, 230 00:12:11,640 --> 00:12:14,240 Speaker 1: I suspect that people who are being seen for the 231 00:12:14,280 --> 00:12:17,760 Speaker 1: first time by someone that they know understands what they're 232 00:12:17,760 --> 00:12:21,080 Speaker 1: living with, are very capable of opening up in a 233 00:12:21,120 --> 00:12:23,520 Speaker 1: way they maybe have it before. What has that been 234 00:12:23,600 --> 00:12:25,679 Speaker 1: like for you, and how candid do people get with 235 00:12:25,720 --> 00:12:27,400 Speaker 1: you about their personal lives. 236 00:12:27,880 --> 00:12:30,920 Speaker 2: Hearing from the community directly, be that a message through 237 00:12:30,960 --> 00:12:33,880 Speaker 2: get your Skin out, or you know, sharing their images 238 00:12:33,920 --> 00:12:36,640 Speaker 2: to be used in an activation like New York last 239 00:12:36,720 --> 00:12:40,760 Speaker 2: year is something that I find constantly very moving and 240 00:12:40,800 --> 00:12:41,640 Speaker 2: deeply touching. 241 00:12:41,800 --> 00:12:43,319 Speaker 3: And I think what. 242 00:12:43,160 --> 00:12:46,480 Speaker 2: That really has shone a light on is that because 243 00:12:46,600 --> 00:12:52,200 Speaker 2: of this community connection and space to exist unapologetically. This 244 00:12:52,320 --> 00:12:55,120 Speaker 2: isn't about being fixed, this isn't about here's what you 245 00:12:55,200 --> 00:12:57,440 Speaker 2: need to do. It's just holding space. Really, That's what 246 00:12:57,440 --> 00:13:00,280 Speaker 2: Get Your Skin Out is has allowed people to be 247 00:13:00,320 --> 00:13:04,280 Speaker 2: really open and vulnerable with me. And that over the 248 00:13:04,360 --> 00:13:08,120 Speaker 2: years has really been this archive and catalog, if you will, 249 00:13:08,280 --> 00:13:12,120 Speaker 2: of people's stories and they can be anecdotal of going 250 00:13:12,160 --> 00:13:14,760 Speaker 2: to the shop and something happening, or just that they 251 00:13:14,800 --> 00:13:16,880 Speaker 2: know that they have something like Get your Skin Out 252 00:13:17,200 --> 00:13:19,920 Speaker 2: as a resource that they can go, wow, I'm not alone. 253 00:13:20,120 --> 00:13:24,120 Speaker 3: And so to answer your question, it is profound. 254 00:13:23,679 --> 00:13:26,720 Speaker 2: How much people share and it always shocks me that 255 00:13:26,800 --> 00:13:29,679 Speaker 2: they trust me with that. So I think you know 256 00:13:29,840 --> 00:13:32,800 Speaker 2: that trust is something that is always there, and I 257 00:13:32,920 --> 00:13:34,480 Speaker 2: work to really foster and grow. 258 00:13:35,240 --> 00:13:37,600 Speaker 1: I'm going to shift a little bit here because you 259 00:13:37,720 --> 00:13:41,240 Speaker 1: mentioned earlier this is of course an ongoing thing. It's 260 00:13:41,280 --> 00:13:43,760 Speaker 1: part of your day to day life. What are your 261 00:13:43,920 --> 00:13:46,160 Speaker 1: flare ups like, how are you dealing with it on 262 00:13:46,200 --> 00:13:48,760 Speaker 1: a daily basis, What is your kind of day to 263 00:13:48,840 --> 00:13:50,319 Speaker 1: day ethos like about it? 264 00:13:50,960 --> 00:13:53,600 Speaker 2: I think over twenty years that has changed, I think, 265 00:13:53,640 --> 00:13:55,960 Speaker 2: and that is not a fault of my own. I 266 00:13:55,960 --> 00:13:58,960 Speaker 2: think it's our access point when we are diagnosed first 267 00:13:59,000 --> 00:14:01,000 Speaker 2: and foremost, as we say, do you know, it's very 268 00:14:01,080 --> 00:14:04,720 Speaker 2: much a visual looking aesthetically at your skin. So the journey, 269 00:14:04,720 --> 00:14:07,640 Speaker 2: initially for me anyways, started as how do I do 270 00:14:07,760 --> 00:14:10,160 Speaker 2: things so my skin is not flaring and my crisis 271 00:14:10,240 --> 00:14:13,240 Speaker 2: is not showing. But over this twenty year period of 272 00:14:13,280 --> 00:14:17,000 Speaker 2: living with crisis, I think that has moved into viewing 273 00:14:17,040 --> 00:14:21,200 Speaker 2: myself and my body as more holistically. So now actually 274 00:14:21,680 --> 00:14:25,240 Speaker 2: I don't measure myself or where I am by how 275 00:14:25,280 --> 00:14:28,240 Speaker 2: my crisis looks on my skin. I measure it by 276 00:14:28,720 --> 00:14:32,080 Speaker 2: where am I mentally, how am I feeling? And I 277 00:14:32,120 --> 00:14:34,080 Speaker 2: think for me that took a long long time to 278 00:14:34,160 --> 00:14:38,520 Speaker 2: really bring in the mental health aspect and an emotional first, 279 00:14:38,840 --> 00:14:41,560 Speaker 2: which for a very rigid producer who lives their life 280 00:14:41,600 --> 00:14:44,000 Speaker 2: and excel was a hard journey. So to apply that 281 00:14:44,200 --> 00:14:47,240 Speaker 2: to my skin condition. And so what that really means 282 00:14:47,280 --> 00:14:49,520 Speaker 2: now is making sure that I'm living a balance life 283 00:14:49,560 --> 00:14:52,160 Speaker 2: and for me that means exercising every day. It does 284 00:14:52,280 --> 00:14:55,240 Speaker 2: mean avoiding food groups that you know are triggers. I 285 00:14:55,240 --> 00:14:57,040 Speaker 2: think that's a word that we use in the community. 286 00:14:57,120 --> 00:15:01,520 Speaker 2: So yes, I love carbohydrate, and I love pasta and 287 00:15:01,760 --> 00:15:04,160 Speaker 2: bread and all the good things, but you know, they 288 00:15:04,240 --> 00:15:07,160 Speaker 2: actually really don't agree with my body. And for me, 289 00:15:07,240 --> 00:15:10,960 Speaker 2: it's making a wider connection in my body beyond my skin. 290 00:15:11,480 --> 00:15:13,320 Speaker 2: It's going how does my gut feel? How does my 291 00:15:13,360 --> 00:15:15,480 Speaker 2: brain feel? Do I have brain fog? Do I feel 292 00:15:15,480 --> 00:15:19,000 Speaker 2: really sluggish? And so again, removing it just from kind 293 00:15:19,000 --> 00:15:21,080 Speaker 2: of topically what's on the skin to this kind of 294 00:15:21,080 --> 00:15:24,400 Speaker 2: full body picture is what has allowed me to live 295 00:15:24,480 --> 00:15:28,000 Speaker 2: well with psoriasis. And that is a learning every day 296 00:15:28,480 --> 00:15:31,040 Speaker 2: and I mess up all the time, but you know, 297 00:15:31,240 --> 00:15:33,920 Speaker 2: I have to be really kind to myself and feel 298 00:15:34,000 --> 00:15:35,400 Speaker 2: balanced and know that it's a journey. 299 00:15:37,280 --> 00:15:39,120 Speaker 1: Holly, I want to thank you so much for sharing 300 00:15:39,160 --> 00:15:41,520 Speaker 1: your story with us, and when we come back, I'm 301 00:15:41,560 --> 00:15:44,000 Speaker 1: going to share some history with you. So hold tight 302 00:15:44,520 --> 00:15:48,120 Speaker 1: because after this break, Ben Franklin and Lizzie Siddel, you 303 00:15:48,240 --> 00:15:50,680 Speaker 1: may be surprised with how much they share with modern 304 00:15:50,680 --> 00:16:10,760 Speaker 1: psoriasis patience so more. In just a minute, welcome back 305 00:16:10,880 --> 00:16:14,520 Speaker 1: to our Skin. Today, we are going to delve into 306 00:16:14,600 --> 00:16:16,720 Speaker 1: a topic that might make you want to scratch an 307 00:16:16,720 --> 00:16:19,640 Speaker 1: itch just thinking about it. It's something that is one 308 00:16:19,680 --> 00:16:22,960 Speaker 1: of the most uncomfortable and common symptoms for people who 309 00:16:23,000 --> 00:16:26,400 Speaker 1: have chronic conditions that affect the skin, like psoriasis, And 310 00:16:26,480 --> 00:16:28,400 Speaker 1: that is right. We're going to talk about itchiness a 311 00:16:28,400 --> 00:16:31,320 Speaker 1: little bit. We have discussed a lot already on the 312 00:16:31,320 --> 00:16:34,240 Speaker 1: show how visible symptoms can take a real toll on 313 00:16:34,320 --> 00:16:38,440 Speaker 1: people's mental health, but there are also unseen symptoms like 314 00:16:38,600 --> 00:16:41,840 Speaker 1: itch that really affect people's quality of life as well 315 00:16:41,880 --> 00:16:44,720 Speaker 1: as their mental health too. So first we're going to 316 00:16:44,760 --> 00:16:48,080 Speaker 1: talk about what itching even is. Is it a physical sensation, 317 00:16:48,440 --> 00:16:52,960 Speaker 1: is it something more psychological? Sometimes it seems like itching 318 00:16:53,200 --> 00:16:56,160 Speaker 1: is in itself contagious in its own way, like yawning. 319 00:16:56,360 --> 00:16:59,840 Speaker 1: If you see someone itching, you will suddenly have an itch. 320 00:17:00,120 --> 00:17:03,000 Speaker 1: Happens to me all the time. And there's actually a 321 00:17:03,040 --> 00:17:05,040 Speaker 1: lot of really cool research on these things that we'll 322 00:17:05,080 --> 00:17:07,679 Speaker 1: get into. And we're also going to peek into the 323 00:17:08,480 --> 00:17:13,159 Speaker 1: private writings of two historical figures who likely had psoriasis. 324 00:17:13,760 --> 00:17:16,120 Speaker 1: Benjamin Franklin I think we all know that guy right, 325 00:17:16,160 --> 00:17:19,800 Speaker 1: good and bad. And Elizabeth Siddell. She was the Victorian 326 00:17:19,840 --> 00:17:24,840 Speaker 1: era's biggest supermodel before that term even existed. Today we 327 00:17:24,880 --> 00:17:26,960 Speaker 1: share stuff all the time on social media, but of 328 00:17:27,000 --> 00:17:30,320 Speaker 1: course in the past people had to put their thoughts 329 00:17:30,359 --> 00:17:33,240 Speaker 1: and their day to day inklings down in a journal. 330 00:17:33,359 --> 00:17:35,639 Speaker 1: So we're going to consider this like a dip into 331 00:17:35,680 --> 00:17:39,639 Speaker 1: Ben and Lizz's Instagram feeds history style. So first we're 332 00:17:39,640 --> 00:17:41,560 Speaker 1: going to talk about what itch is. There is a 333 00:17:41,600 --> 00:17:45,040 Speaker 1: technical term which is protis. That is a medical term 334 00:17:45,040 --> 00:17:48,480 Speaker 1: that describes a chronic, irritating sensation on the skin that 335 00:17:48,560 --> 00:17:51,399 Speaker 1: makes you want to scratch, and that can be localized 336 00:17:51,400 --> 00:17:53,760 Speaker 1: to one area or it can spread throughout the body. 337 00:17:54,280 --> 00:17:56,679 Speaker 1: I know I have definitely had itches that are just 338 00:17:56,760 --> 00:18:00,439 Speaker 1: intense and felt painful, and in fact it have a 339 00:18:00,440 --> 00:18:05,560 Speaker 1: lot of physiological similarities to pain response. So sensations for 340 00:18:05,640 --> 00:18:09,440 Speaker 1: itching and pain are both carried over unmilinated nerve fibers. 341 00:18:09,880 --> 00:18:12,360 Speaker 1: That is the type of nerve fiber that transmits signals 342 00:18:12,359 --> 00:18:15,840 Speaker 1: from our extremities to the central nervous system, and those 343 00:18:15,840 --> 00:18:18,680 Speaker 1: nerve fibers originate in the skin and they bring those 344 00:18:18,720 --> 00:18:22,040 Speaker 1: signals to the brain. So both pain and itch are 345 00:18:22,119 --> 00:18:28,000 Speaker 1: similar usually unpleasant sensory experiences, but their behavior response patterns 346 00:18:28,000 --> 00:18:32,520 Speaker 1: are different. Pain creates a withdrawal reflex, whereas itches lead 347 00:18:32,560 --> 00:18:37,359 Speaker 1: to you guessed it, a scratch reflex. Clinically, itching is 348 00:18:37,480 --> 00:18:40,600 Speaker 1: basically treated as a very mild form of pain. Its 349 00:18:40,600 --> 00:18:45,080 Speaker 1: severity is only accessible through patient self reporting, and like 350 00:18:45,160 --> 00:18:49,040 Speaker 1: chronic pain, chronic itching can be very easily dismissed by others, 351 00:18:49,119 --> 00:18:53,159 Speaker 1: including medical professionals, because listen, it's complicated. There are, of 352 00:18:53,200 --> 00:18:56,200 Speaker 1: course physical reasons for an itch, but a two thousand 353 00:18:56,200 --> 00:18:59,119 Speaker 1: and eight review of studies of itch also revealed that 354 00:18:59,200 --> 00:19:03,639 Speaker 1: their psychological origins of some itches. Even seeing a picture 355 00:19:03,680 --> 00:19:07,520 Speaker 1: of itchy things like bugs produces a scratch response in 356 00:19:07,600 --> 00:19:12,439 Speaker 1: some study participants. Do you find yourself noting that you 357 00:19:12,560 --> 00:19:16,000 Speaker 1: have an itch response when you see like something that 358 00:19:16,119 --> 00:19:18,520 Speaker 1: just looks scratchy on TV? Mine is always if I 359 00:19:18,560 --> 00:19:21,280 Speaker 1: watch a home improvement show and I see the sandpaper, 360 00:19:21,600 --> 00:19:24,280 Speaker 1: I just want to I want to scratch my entire body. 361 00:19:24,720 --> 00:19:27,560 Speaker 2: Oh yeah, absolutely, I'm sitting here going yeah, what about 362 00:19:27,560 --> 00:19:29,080 Speaker 2: that one thing that always makes me itch? 363 00:19:29,200 --> 00:19:32,000 Speaker 3: Absolutely? I mean I really relate to that. 364 00:19:32,000 --> 00:19:34,439 Speaker 2: In terms of having this physical response that you just 365 00:19:34,480 --> 00:19:37,159 Speaker 2: want to go, oh and scratch everywhere and kind of 366 00:19:37,160 --> 00:19:40,240 Speaker 2: attack the source. But I really relate, you know, even 367 00:19:40,280 --> 00:19:43,000 Speaker 2: though mine on a day to day is an itchy, 368 00:19:43,160 --> 00:19:45,399 Speaker 2: I think when it has been actually, particularly if I 369 00:19:45,440 --> 00:19:47,680 Speaker 2: have a neck flare of my crisis. 370 00:19:48,000 --> 00:19:49,240 Speaker 3: It is insatiable. 371 00:19:49,520 --> 00:19:51,639 Speaker 1: I mean, I know, even sitting here talking about it, 372 00:19:51,720 --> 00:19:53,919 Speaker 1: I'm like, does my ear itches? I think also of 373 00:19:53,960 --> 00:19:56,760 Speaker 1: my head itches? And I think does my hipitch? Is 374 00:19:56,800 --> 00:20:00,240 Speaker 1: that going on? I was thinking about recording this show 375 00:20:00,280 --> 00:20:02,040 Speaker 1: last night as I fell asleep, and I was like, 376 00:20:02,119 --> 00:20:05,320 Speaker 1: my side itch is like everything that I thought about. 377 00:20:05,400 --> 00:20:07,240 Speaker 1: I would be like, oh, yes, that is also itchy. 378 00:20:07,840 --> 00:20:10,199 Speaker 1: What's really interesting in all of this is that we 379 00:20:10,280 --> 00:20:14,280 Speaker 1: really tend to underestimate how serious itch can be, right 380 00:20:14,280 --> 00:20:19,320 Speaker 1: because chronic itch also has associations with increased stress, anxiety, 381 00:20:19,760 --> 00:20:24,679 Speaker 1: other mood disorders, and stress and anxiety can exacerbate an itch. 382 00:20:24,880 --> 00:20:27,800 Speaker 1: And if there's a condition that causes it, like having 383 00:20:27,880 --> 00:20:30,760 Speaker 1: a psoriasis flare up at a stressful time, then you 384 00:20:30,840 --> 00:20:34,199 Speaker 1: are in the vicious cycle where you have wanted to 385 00:20:34,240 --> 00:20:36,600 Speaker 1: scratch and you have given into that impulse, and then 386 00:20:36,600 --> 00:20:40,400 Speaker 1: it can actually damage your skin and create a longer 387 00:20:40,440 --> 00:20:44,359 Speaker 1: cycle of healing, and then you just itch more. It's 388 00:20:44,760 --> 00:20:49,080 Speaker 1: the cruelest impulse we maybe have as humans. The other 389 00:20:49,200 --> 00:20:51,719 Speaker 1: thing that is interesting is that it's a non visible 390 00:20:51,800 --> 00:20:56,359 Speaker 1: symptom unless it shows up in daily life by scratching 391 00:20:56,400 --> 00:20:58,520 Speaker 1: it right, somebody can't look at you and say, I 392 00:20:58,560 --> 00:21:00,760 Speaker 1: bet they're itchy. You're doing some some thing physically that 393 00:21:00,800 --> 00:21:03,680 Speaker 1: shows that, And it has been the object of medical 394 00:21:03,720 --> 00:21:06,639 Speaker 1: and scientific curiosity literally centuries. People have been trying to 395 00:21:06,640 --> 00:21:09,560 Speaker 1: figure it out. But it is only more recent that 396 00:21:09,640 --> 00:21:13,800 Speaker 1: medical research has taken itch actually seriously as a symptom. So, 397 00:21:14,359 --> 00:21:16,800 Speaker 1: as I'm sure you can imagine, it's hard to design 398 00:21:16,800 --> 00:21:20,600 Speaker 1: a study that measures a subjective symptom. Yeah, what is that, right? 399 00:21:20,760 --> 00:21:24,080 Speaker 1: My itch is different than your itch. So because it's 400 00:21:24,080 --> 00:21:27,760 Speaker 1: self reported, it's always really hard to draw any conclusions 401 00:21:27,920 --> 00:21:32,360 Speaker 1: about any historical understanding and retroactively apply what we learn 402 00:21:32,440 --> 00:21:36,800 Speaker 1: about itch from anecdotal evidence. Because what somebody wrote about 403 00:21:36,800 --> 00:21:39,359 Speaker 1: what they felt, we don't have a way to measure 404 00:21:39,400 --> 00:21:43,159 Speaker 1: that in an objective controlled way. But thankfully, since the 405 00:21:43,240 --> 00:21:47,320 Speaker 1: establishment of dermatology as an independent discipline of medicine that 406 00:21:47,440 --> 00:21:50,680 Speaker 1: happened not until the middle of the nineteenth century, itch 407 00:21:50,760 --> 00:21:53,040 Speaker 1: has gotten a lot more attention as a subject of 408 00:21:53,119 --> 00:21:56,720 Speaker 1: rigorous scientific investigation. And as we've seen with psoriasis and 409 00:21:56,760 --> 00:22:00,880 Speaker 1: other skin conditions, generally, right back in the day, when 410 00:22:00,920 --> 00:22:05,040 Speaker 1: people even reported, oh, I haven't itch, it was often 411 00:22:05,160 --> 00:22:09,840 Speaker 1: perceived as them having a moral lapse, a lack of hygiene, 412 00:22:10,680 --> 00:22:14,880 Speaker 1: social issues, impulse control issues. It was always seen as 413 00:22:14,960 --> 00:22:19,359 Speaker 1: the patient's fault. So I want to know what you 414 00:22:19,480 --> 00:22:22,200 Speaker 1: have seen in your own activism and in the modern 415 00:22:22,280 --> 00:22:25,240 Speaker 1: day where those kind of problems still persist, because they 416 00:22:25,320 --> 00:22:27,040 Speaker 1: do absolutely. 417 00:22:27,240 --> 00:22:30,960 Speaker 2: I mean, I think viewing something like psoriasis or any 418 00:22:31,040 --> 00:22:34,399 Speaker 2: other skin condition that visually appears on your skin, I 419 00:22:34,400 --> 00:22:37,239 Speaker 2: think the first thing that people come to is this 420 00:22:37,359 --> 00:22:40,000 Speaker 2: idea of disgust and shame and therefore that it is 421 00:22:40,040 --> 00:22:42,959 Speaker 2: your fault that you just said, Holly, right, So taking 422 00:22:43,000 --> 00:22:46,640 Speaker 2: that step further to go why is this happening? Why 423 00:22:46,800 --> 00:22:49,760 Speaker 2: is this a body response to actually scratch your skin? 424 00:22:50,359 --> 00:22:53,800 Speaker 2: Is something that people struggle with every single day. Being 425 00:22:53,840 --> 00:22:57,320 Speaker 2: able to say, am I stressed because I haven't slept 426 00:22:57,600 --> 00:22:59,040 Speaker 2: because I've been itching all night? 427 00:22:59,480 --> 00:23:02,159 Speaker 3: Is that the cycle? Or you know what is it? 428 00:23:02,200 --> 00:23:04,720 Speaker 2: And getting Clarency on that I really encourage people to 429 00:23:04,760 --> 00:23:07,280 Speaker 2: do so that people can take these symptoms like the 430 00:23:07,320 --> 00:23:08,120 Speaker 2: itch seriously. 431 00:23:08,960 --> 00:23:12,280 Speaker 1: I think too, there's an interesting side benefit of that too, right, 432 00:23:12,320 --> 00:23:16,680 Speaker 1: where if people are reporting accurately and openly to their 433 00:23:16,680 --> 00:23:21,320 Speaker 1: medical professional about itch, that's giving us more information so 434 00:23:21,400 --> 00:23:24,399 Speaker 1: we can develop a better database of understanding so that 435 00:23:24,840 --> 00:23:27,159 Speaker 1: in another eighty years people will be like, can you 436 00:23:27,200 --> 00:23:30,800 Speaker 1: believe in the early twenty twenties people were only just 437 00:23:30,840 --> 00:23:33,000 Speaker 1: then starting to report itch and that's where we got 438 00:23:33,000 --> 00:23:36,000 Speaker 1: our data from. So it's important you're helping the cause 439 00:23:36,080 --> 00:23:38,719 Speaker 1: if you are open and honest about it. I mean, 440 00:23:38,760 --> 00:23:41,240 Speaker 1: there's also that thing right where. I mean, even today, 441 00:23:41,359 --> 00:23:44,480 Speaker 1: if you are in a public place, like you are 442 00:23:44,520 --> 00:23:46,920 Speaker 1: on the train or the subway, or riding a bus 443 00:23:47,000 --> 00:23:50,960 Speaker 1: or whatever, even in a crowded restaurant and you start scratching, 444 00:23:51,160 --> 00:23:54,840 Speaker 1: people's initial tendency is to lean away or to step away, 445 00:23:55,200 --> 00:23:58,000 Speaker 1: so like we are still dealing with us. It gets 446 00:23:58,040 --> 00:24:00,280 Speaker 1: a lot of side eye in public, but it's also 447 00:24:00,359 --> 00:24:03,880 Speaker 1: really torturous sometimes not to scratch. And by the way, 448 00:24:04,160 --> 00:24:07,000 Speaker 1: as I said a little while ago, you might as 449 00:24:07,000 --> 00:24:09,439 Speaker 1: a listener feel a little itchy just listening to us 450 00:24:09,480 --> 00:24:13,040 Speaker 1: talk about itching. That's backed up by research. In twenty 451 00:24:13,080 --> 00:24:16,639 Speaker 1: twenty two, researchers in Saint Louis identified a pathway in 452 00:24:16,760 --> 00:24:20,280 Speaker 1: mice brains that is activated when one mouse sees another 453 00:24:20,359 --> 00:24:23,520 Speaker 1: mouse scratching. So this itchy feeling that you might be 454 00:24:23,600 --> 00:24:27,719 Speaker 1: having right now has a physical biological basis, just as 455 00:24:27,800 --> 00:24:30,480 Speaker 1: much as if you brushed off a leaf or a fly, 456 00:24:31,119 --> 00:24:33,640 Speaker 1: and that might result in you scratching at your arm. 457 00:24:34,440 --> 00:24:37,480 Speaker 1: So we said earlier, one of the challenges in researching 458 00:24:37,520 --> 00:24:40,080 Speaker 1: itch is that it's hard to standardize, right. How could 459 00:24:40,119 --> 00:24:44,240 Speaker 1: anybody tell if two people in their study both mean 460 00:24:44,280 --> 00:24:47,120 Speaker 1: the exact same thing when they talk about itching, even 461 00:24:47,160 --> 00:24:49,440 Speaker 1: if they describe it in almost the exact same way. 462 00:24:49,720 --> 00:24:53,000 Speaker 1: It's really hard, and self reporting is currently the main 463 00:24:53,040 --> 00:24:56,320 Speaker 1: way that most people communicate about this symptom. That has 464 00:24:56,359 --> 00:24:58,520 Speaker 1: not changed over the hundreds of years we've been trying 465 00:24:58,520 --> 00:25:01,280 Speaker 1: to learn more. So, so one way to get at 466 00:25:01,280 --> 00:25:04,000 Speaker 1: what itch felt like way back when is to look 467 00:25:04,000 --> 00:25:06,040 Speaker 1: at some primary sources. And this is where we are 468 00:25:06,040 --> 00:25:08,760 Speaker 1: going to talk about good old Ben Franklin, because yes, 469 00:25:08,840 --> 00:25:12,560 Speaker 1: it is very likely that he had psoriasis. He wrote 470 00:25:12,560 --> 00:25:16,479 Speaker 1: about something that he called the scurf, although he varied 471 00:25:16,560 --> 00:25:19,240 Speaker 1: in writing about it. It wasn't consistent. Sometimes he would 472 00:25:19,240 --> 00:25:21,920 Speaker 1: write it with one f, sometimes with two. And it's 473 00:25:22,080 --> 00:25:25,080 Speaker 1: very clear that he really went through it when the 474 00:25:25,119 --> 00:25:28,399 Speaker 1: scurf reared its ugly head. So this is a quote 475 00:25:28,400 --> 00:25:32,080 Speaker 1: from October seventeenth of seventeen seventy seven. And this is 476 00:25:32,080 --> 00:25:35,000 Speaker 1: actually interesting because it's written in the third person, because 477 00:25:35,000 --> 00:25:37,640 Speaker 1: he was writing this to give to a friend who 478 00:25:37,720 --> 00:25:40,720 Speaker 1: was taking it to London to get an expert opinion 479 00:25:40,840 --> 00:25:45,480 Speaker 1: about treatment. So he wrote quote, in November seventeen seventy six, 480 00:25:45,840 --> 00:25:48,400 Speaker 1: he made a long sea voyage in which the disorder 481 00:25:48,480 --> 00:25:52,200 Speaker 1: sensibly increased part of each arm and of each side, 482 00:25:52,480 --> 00:25:54,800 Speaker 1: the small of his back, and parts of his thighs 483 00:25:54,800 --> 00:25:59,040 Speaker 1: and legs became covered with the scurf, which became very troublesome, 484 00:25:59,200 --> 00:26:04,520 Speaker 1: itching sometimes extremely so to contextualize when this is going on, 485 00:26:04,960 --> 00:26:08,600 Speaker 1: this is October of seventeen seventy seven, some big stuff 486 00:26:08,640 --> 00:26:12,680 Speaker 1: going on in Ben Franklin's life at that tasting right, 487 00:26:12,720 --> 00:26:15,320 Speaker 1: So we're talking about the Revolutionary War, which was in 488 00:26:15,359 --> 00:26:18,480 Speaker 1: its second year. It's interesting because obviously that would have 489 00:26:18,480 --> 00:26:20,800 Speaker 1: been stressful, which can be its own trigger. But also 490 00:26:21,560 --> 00:26:24,679 Speaker 1: how much must it have been bothering Ben Franklin for 491 00:26:24,760 --> 00:26:26,760 Speaker 1: him to stop and be like, I got to get 492 00:26:26,800 --> 00:26:28,840 Speaker 1: medical advice about this whole situation. 493 00:26:29,000 --> 00:26:31,920 Speaker 3: I love that, But you know, I'm sure people really 494 00:26:31,920 --> 00:26:32,440 Speaker 3: relate to. 495 00:26:32,400 --> 00:26:34,720 Speaker 2: Them, because, as we've discussed on the show, it is 496 00:26:34,760 --> 00:26:38,119 Speaker 2: a part of everyday life. So Ben Franklin Wool and 497 00:26:38,200 --> 00:26:41,040 Speaker 2: everything that he did, you know, freeing America. But you 498 00:26:41,080 --> 00:26:43,720 Speaker 2: know you still have bloody cis or the scuff, which 499 00:26:43,800 --> 00:26:45,919 Speaker 2: I just I think we should bring that back. I 500 00:26:45,920 --> 00:26:48,359 Speaker 2: think we should decide on one f or two. 501 00:26:48,480 --> 00:26:49,280 Speaker 3: And bring it back. 502 00:26:49,400 --> 00:26:50,040 Speaker 1: I like it with too. 503 00:26:50,119 --> 00:26:51,440 Speaker 3: I don't know why. Yeah. Same. 504 00:26:51,680 --> 00:26:54,040 Speaker 1: So in seventeen seventy seven when he did this, he 505 00:26:54,160 --> 00:26:57,639 Speaker 1: was serving on a commission to France charged with, you know, 506 00:26:57,760 --> 00:27:02,159 Speaker 1: getting French financial support or for American independence. He was 507 00:27:02,200 --> 00:27:04,800 Speaker 1: in the middle of very important stuff. But what is 508 00:27:04,880 --> 00:27:07,240 Speaker 1: great and I think is a good model for behavior, 509 00:27:07,359 --> 00:27:11,520 Speaker 1: is that he felt very comfortable recounting his symptoms very candidly. 510 00:27:11,960 --> 00:27:14,280 Speaker 1: He didn't hold back. He talked about everywhere it was. So, 511 00:27:14,600 --> 00:27:16,280 Speaker 1: you know, we have been talking him a lot about 512 00:27:16,280 --> 00:27:20,040 Speaker 1: people feeling judged or otherwise misunderstood and how that can 513 00:27:20,119 --> 00:27:24,280 Speaker 1: lead to avoidance of medical treatment. Do you still see 514 00:27:24,320 --> 00:27:26,679 Speaker 1: that today? I know you want people to see past that, 515 00:27:26,760 --> 00:27:29,479 Speaker 1: and you've talked about this being an important initial step, 516 00:27:30,160 --> 00:27:33,520 Speaker 1: But I feel like there are probably people that are 517 00:27:33,600 --> 00:27:36,160 Speaker 1: out there that know something's going on with their skin, 518 00:27:36,440 --> 00:27:40,560 Speaker 1: but they're also really scared to have open conversations with 519 00:27:41,119 --> 00:27:44,000 Speaker 1: doctors or other medical professionals. Do you encounter that in 520 00:27:44,040 --> 00:27:45,879 Speaker 1: any of your activism. Yeah. 521 00:27:46,040 --> 00:27:46,720 Speaker 3: Absolutely. 522 00:27:46,840 --> 00:27:48,520 Speaker 2: I mean, first, I think we should just say for 523 00:27:48,560 --> 00:27:52,120 Speaker 2: the show, Ben Franklin was an original get your Skin 524 00:27:52,200 --> 00:27:55,760 Speaker 2: Out person, which I just saw that. Let's just have 525 00:27:55,840 --> 00:27:58,040 Speaker 2: that as a statement number one. But I think ull 526 00:27:58,119 --> 00:28:01,480 Speaker 2: jexu aside. Yes, when people here get your Skin Out 527 00:28:01,560 --> 00:28:04,240 Speaker 2: or come to it, I think they get really thrown off. 528 00:28:04,359 --> 00:28:06,080 Speaker 2: And this is some of the feedback that I've had, 529 00:28:06,119 --> 00:28:07,920 Speaker 2: which is I don't want to get my skin out. 530 00:28:08,040 --> 00:28:08,679 Speaker 3: I'm not ready. 531 00:28:09,240 --> 00:28:12,119 Speaker 2: That is okay, But I think it's about knowing that 532 00:28:12,240 --> 00:28:14,840 Speaker 2: if you ever do come to that or you need it, 533 00:28:14,880 --> 00:28:17,840 Speaker 2: that you have choice. And I think sometimes the medical 534 00:28:17,880 --> 00:28:19,960 Speaker 2: system really makes us feel that we don't have that 535 00:28:20,119 --> 00:28:22,840 Speaker 2: choice because that's the only route in to really get 536 00:28:22,880 --> 00:28:26,000 Speaker 2: something that is solidified and medical diagnosis. 537 00:28:26,119 --> 00:28:26,320 Speaker 1: Right. 538 00:28:26,600 --> 00:28:29,280 Speaker 2: But through community support like get your Skin Out or 539 00:28:29,320 --> 00:28:32,560 Speaker 2: many other people that are sharing, you can still feel connected, 540 00:28:32,640 --> 00:28:35,160 Speaker 2: you can still feel informed, you can still have information. 541 00:28:35,640 --> 00:28:38,600 Speaker 2: Generating something like get your Skin Out and many kind 542 00:28:38,640 --> 00:28:42,440 Speaker 2: of community avenues is really about saying there are many options, 543 00:28:42,520 --> 00:28:45,640 Speaker 2: and we see you and you can be held. 544 00:28:46,640 --> 00:28:49,680 Speaker 1: I want to jump back into some interesting studies that 545 00:28:49,680 --> 00:28:51,480 Speaker 1: have been done. And then I really want to talk 546 00:28:51,480 --> 00:28:55,760 Speaker 1: about Elizabeth Siddel because she's quite fascinating. Yes, there has 547 00:28:55,800 --> 00:28:59,760 Speaker 1: been debate in medical literature about whether psychiatric factors are 548 00:28:59,760 --> 00:29:02,960 Speaker 1: act actually the cause or the consequence of chronic itchiness. 549 00:29:03,680 --> 00:29:06,480 Speaker 1: The latter explanation seems to be gaining actually a little 550 00:29:06,520 --> 00:29:09,120 Speaker 1: bit of traction in medical literature. There was a recent, 551 00:29:09,280 --> 00:29:12,440 Speaker 1: though pretty small study that suggested that half of the 552 00:29:12,520 --> 00:29:15,680 Speaker 1: patients that deal with chronic itchiness had at least some 553 00:29:15,880 --> 00:29:20,800 Speaker 1: psychological fallout. Most commonly they also had anxiety. And back 554 00:29:20,800 --> 00:29:23,320 Speaker 1: in the eighteen hundreds, when our next historical figure lived, 555 00:29:23,360 --> 00:29:26,440 Speaker 1: there was so little knowledge about skin disorders and treatments 556 00:29:26,640 --> 00:29:30,680 Speaker 1: were so rudimentary that patients added emotional distress was not 557 00:29:30,760 --> 00:29:32,960 Speaker 1: even considered at all. It just was not part of 558 00:29:32,960 --> 00:29:36,880 Speaker 1: the equation. So treating psychological symptoms was not even a thought. 559 00:29:37,000 --> 00:29:41,480 Speaker 1: And Elizabeth Siddel had some mental health issues unfortunately, that 560 00:29:41,560 --> 00:29:45,200 Speaker 1: are tied to all of this. So Elizabeth Siddel is 561 00:29:45,200 --> 00:29:48,000 Speaker 1: this really, as I said, fascinating creature. She was an 562 00:29:48,080 --> 00:29:51,320 Speaker 1: English artist, a poet. She was a model associated with 563 00:29:51,360 --> 00:29:54,640 Speaker 1: the pre Raphaelite brotherhood. If you have ever seen that 564 00:29:54,720 --> 00:29:58,360 Speaker 1: painting of Ophelia lying in a stream by John Everett Malay. 565 00:29:59,320 --> 00:30:02,640 Speaker 1: She is the mod for it. Oh, no way she is. 566 00:30:02,760 --> 00:30:05,040 Speaker 1: He floated her in a bathtub so that he could 567 00:30:05,040 --> 00:30:08,160 Speaker 1: observe her with that watery effect and paint from that. 568 00:30:08,160 --> 00:30:11,000 Speaker 1: That water was, allegedly though, so cold that she later 569 00:30:11,160 --> 00:30:13,440 Speaker 1: sued him to get him to pay her medical bills 570 00:30:13,800 --> 00:30:17,800 Speaker 1: because she got pneumonia from sitting for him. Elizabeth is 571 00:30:17,840 --> 00:30:20,960 Speaker 1: also believed to have had a chronic health condition that 572 00:30:21,240 --> 00:30:25,760 Speaker 1: resembled psoriasis, and one of her comorbidities was definitely mental 573 00:30:25,840 --> 00:30:29,640 Speaker 1: health issues. Her poetry wasn't published in her lifetime, but 574 00:30:29,720 --> 00:30:33,040 Speaker 1: it is full of references to depression and anxiety and 575 00:30:33,080 --> 00:30:36,320 Speaker 1: troubled thoughts. And she passed away at just the age 576 00:30:36,360 --> 00:30:40,360 Speaker 1: of thirty two in eighteen sixty two from a misuse 577 00:30:40,440 --> 00:30:43,400 Speaker 1: of laudanum, which was, for anybody that doesn't know, a 578 00:30:43,440 --> 00:30:47,360 Speaker 1: powerful and very addictive mixture of alcohol and morphine. And 579 00:30:47,440 --> 00:30:50,000 Speaker 1: when she died, she also had arsenic in her system 580 00:30:50,280 --> 00:30:53,280 Speaker 1: that was very likely part of a treatment for her 581 00:30:53,320 --> 00:30:57,600 Speaker 1: skin disorder, so a diluted solution of arsenic was often 582 00:30:57,720 --> 00:31:01,800 Speaker 1: applied topically to plaques when people present with them. If 583 00:31:01,920 --> 00:31:06,800 Speaker 1: arsenic on her skin sounds bananas to you. Here's the thing. Remember, 584 00:31:06,880 --> 00:31:09,040 Speaker 1: she was trying to be and she really was the 585 00:31:09,240 --> 00:31:13,400 Speaker 1: supermodel of the Victorian era, and their beauty standards were 586 00:31:13,560 --> 00:31:16,400 Speaker 1: just as strict as ours, which is very relatable. She 587 00:31:16,560 --> 00:31:19,400 Speaker 1: was under a lot of pressure. And then, to top 588 00:31:19,400 --> 00:31:21,840 Speaker 1: it off, in the eighteenth and nineteenth centuries, the medical 589 00:31:21,960 --> 00:31:27,000 Speaker 1: understanding of skin conditions was very rudimentary. Things like psoriasis 590 00:31:27,040 --> 00:31:30,920 Speaker 1: were often misunderstood, they were just as often misdiagnosed. This 591 00:31:31,000 --> 00:31:34,160 Speaker 1: led to a variety of treatments that ranged from ineffective 592 00:31:34,200 --> 00:31:38,200 Speaker 1: to flat out dangerous. We just talked about arsenic. Ben 593 00:31:38,240 --> 00:31:42,600 Speaker 1: Franklin and Elizabeth Siddall's experiences provide insight into the challenges 594 00:31:42,640 --> 00:31:45,760 Speaker 1: that were faced by individuals with chronic skin conditions during 595 00:31:45,760 --> 00:31:49,720 Speaker 1: these periods. And we've seen through these experiences that chronic 596 00:31:49,760 --> 00:31:53,640 Speaker 1: skin conditions have been part of humanity forever, affecting both 597 00:31:53,640 --> 00:31:56,880 Speaker 1: physical and mental health, even if people were not cognizant 598 00:31:56,880 --> 00:31:59,000 Speaker 1: that those two things were so tightly tied together at 599 00:31:59,000 --> 00:32:02,000 Speaker 1: the time. The historical accounts really give us a deeper 600 00:32:02,080 --> 00:32:05,520 Speaker 1: understanding of all of these struggles. The same things, Holly, 601 00:32:05,560 --> 00:32:08,040 Speaker 1: that you have been educating people about and helping them 602 00:32:08,080 --> 00:32:10,800 Speaker 1: with have been problems for a long time. Perhaps they 603 00:32:10,800 --> 00:32:14,320 Speaker 1: would have benefited from a hashtag get the scurf out campaign. 604 00:32:14,560 --> 00:32:16,440 Speaker 3: Let's get it trending, let's do it. 605 00:32:18,000 --> 00:32:21,680 Speaker 1: You do so much, Holly, to destigmatize psoriasis, And as 606 00:32:21,680 --> 00:32:23,800 Speaker 1: we just saw, that has been a work in progress 607 00:32:23,800 --> 00:32:25,920 Speaker 1: for a really long time. People have been trying to 608 00:32:25,920 --> 00:32:29,600 Speaker 1: figure this out for hundreds of years. What do you think, 609 00:32:29,720 --> 00:32:33,440 Speaker 1: knowing all that you know and having been through all 610 00:32:33,480 --> 00:32:36,400 Speaker 1: of this activism, what do you think is the biggest 611 00:32:36,400 --> 00:32:40,320 Speaker 1: step that we as a global community could take to 612 00:32:40,400 --> 00:32:42,840 Speaker 1: help people who may be diagnosed now or in the 613 00:32:42,880 --> 00:32:45,640 Speaker 1: future with that effort of destigmatization. 614 00:32:46,080 --> 00:32:50,520 Speaker 2: Ooh, the million dollar question, Holly, right, we all need 615 00:32:50,880 --> 00:32:54,720 Speaker 2: all tomorrow exactly. You know, I think it really is simple. 616 00:32:54,880 --> 00:32:59,760 Speaker 2: I think it's educating yourself and doing it through communication. 617 00:33:00,200 --> 00:33:02,480 Speaker 2: So you ask me, you know, do people come up 618 00:33:02,560 --> 00:33:05,760 Speaker 2: and ask me questions all the time? Yes, and by 619 00:33:05,840 --> 00:33:08,880 Speaker 2: way of communicating with them, which is really relatable. It's 620 00:33:08,920 --> 00:33:12,120 Speaker 2: not bringing in stats and facts or any kind of science, 621 00:33:12,160 --> 00:33:14,800 Speaker 2: but it's saying this is me, I am, Holly, I 622 00:33:14,880 --> 00:33:17,640 Speaker 2: live with crisis. This is actually what it is. No, 623 00:33:17,760 --> 00:33:20,200 Speaker 2: you can't catch it? Did you know this about it? 624 00:33:20,480 --> 00:33:22,880 Speaker 2: And really kind of leaning in and inviting people in, 625 00:33:22,960 --> 00:33:25,000 Speaker 2: I do think is the best way. The more that 626 00:33:25,120 --> 00:33:29,160 Speaker 2: people know and understand what something like crisis is or 627 00:33:29,520 --> 00:33:33,240 Speaker 2: other visible skin conditions, the better off we all are, 628 00:33:33,360 --> 00:33:35,760 Speaker 2: because with some of the research that you've shared, you 629 00:33:35,800 --> 00:33:37,960 Speaker 2: know this isn't a far fetched thing. 630 00:33:38,640 --> 00:33:39,680 Speaker 3: This is very common. 631 00:33:40,320 --> 00:33:43,000 Speaker 2: You know, if you don't have a skin condition, you 632 00:33:43,040 --> 00:33:46,000 Speaker 2: will know someone with one in your immediate circle. So 633 00:33:46,080 --> 00:33:49,880 Speaker 2: I have seen the amazing domino effect of just by 634 00:33:50,040 --> 00:33:53,200 Speaker 2: me having those conversations or people who are around me 635 00:33:53,760 --> 00:33:57,000 Speaker 2: watching me have those conversations and educate people how far 636 00:33:57,160 --> 00:34:01,080 Speaker 2: that has gone. And so I think it's about educating 637 00:34:01,080 --> 00:34:04,120 Speaker 2: yourself on what visible skin conditions are really about and 638 00:34:04,160 --> 00:34:06,240 Speaker 2: how it can affect people's lives with them. 639 00:34:06,840 --> 00:34:09,080 Speaker 1: I'm glad that you brought up that sort of secondary 640 00:34:09,120 --> 00:34:11,960 Speaker 1: group of people who know someone who's dealing with a 641 00:34:12,000 --> 00:34:15,720 Speaker 1: skin condition, and in addition to getting as much knowledge 642 00:34:15,719 --> 00:34:19,880 Speaker 1: as they can, what do you think is the best 643 00:34:19,880 --> 00:34:23,000 Speaker 1: advice or suggestion you can give them about just helping 644 00:34:23,160 --> 00:34:25,080 Speaker 1: the person in their life that has a skin condition 645 00:34:25,600 --> 00:34:26,640 Speaker 1: on their day to day. 646 00:34:26,880 --> 00:34:30,080 Speaker 2: I think ask with a question if the person that 647 00:34:30,160 --> 00:34:33,839 Speaker 2: you know is comfortable letting you in saying how does 648 00:34:33,920 --> 00:34:37,879 Speaker 2: living with zoriasis affect your everyday life? Is there something 649 00:34:37,960 --> 00:34:40,080 Speaker 2: that I don't know? Is there something that you need? 650 00:34:40,200 --> 00:34:42,799 Speaker 2: And I think it's really important. Like with anything, we 651 00:34:42,880 --> 00:34:45,000 Speaker 2: can't assume that just because you know that you live 652 00:34:45,000 --> 00:34:47,800 Speaker 2: with the skin condition, you know what you need. Understanding 653 00:34:48,239 --> 00:34:51,680 Speaker 2: what you need and communicating that is a lifelong journey 654 00:34:51,719 --> 00:34:54,239 Speaker 2: in any area of our lives, because when you do 655 00:34:54,320 --> 00:34:57,359 Speaker 2: live with a skin condition and your every day let 656 00:34:57,440 --> 00:34:59,880 Speaker 2: alone kind of the wider public are a part of 657 00:35:00,200 --> 00:35:03,120 Speaker 2: it can feel really isolating. So as a support system, 658 00:35:03,600 --> 00:35:06,440 Speaker 2: as kind of chosen people is saying I'm here and 659 00:35:06,480 --> 00:35:07,399 Speaker 2: I'm willing to learn. 660 00:35:08,080 --> 00:35:11,560 Speaker 1: Holly, you are clearly a powerhouse of a human and 661 00:35:11,600 --> 00:35:14,319 Speaker 1: your story is very powerful. If you could send one 662 00:35:14,360 --> 00:35:17,480 Speaker 1: message to listeners who might be kind of grappling with 663 00:35:17,520 --> 00:35:19,600 Speaker 1: their own diagnosis, what would that. 664 00:35:19,600 --> 00:35:22,600 Speaker 2: Be, ask for help? I would not be where I 665 00:35:22,680 --> 00:35:25,000 Speaker 2: am without asking for help. Get your skin out? Was 666 00:35:25,040 --> 00:35:27,640 Speaker 2: asking for help? Connecting with people like you, Holly is 667 00:35:27,680 --> 00:35:31,319 Speaker 2: asking for help. It is a journey that creates pathways 668 00:35:31,760 --> 00:35:33,799 Speaker 2: and it helps this access to information. 669 00:35:34,600 --> 00:35:38,480 Speaker 3: It's wonderful. So asking for help, I love it, Holly. 670 00:35:38,520 --> 00:35:39,760 Speaker 1: You are an absolute delight. 671 00:35:39,960 --> 00:35:41,960 Speaker 3: So are you, Holly. Thank you for giving me my 672 00:35:42,120 --> 00:35:42,880 Speaker 3: history lesson. 673 00:35:43,520 --> 00:35:45,359 Speaker 1: I love it, I'm here for it. Thank you so 674 00:35:45,440 --> 00:35:47,320 Speaker 1: much for joining me today. I feel so lucky to 675 00:35:47,400 --> 00:35:54,239 Speaker 1: have spent this time with you. Likewise, thank you. Our 676 00:35:54,360 --> 00:35:58,160 Speaker 1: Skin is hosted by myself, Holly fry An, executive produced 677 00:35:58,160 --> 00:36:01,720 Speaker 1: and engineered by Ryan Martz. Our senior producer and writer 678 00:36:01,960 --> 00:36:05,120 Speaker 1: is Meredith Barnes. If you enjoy the show, share it 679 00:36:05,160 --> 00:36:08,160 Speaker 1: with your friends. You can also listen and follow on 680 00:36:08,200 --> 00:36:11,960 Speaker 1: the iHeartRadio app, Apple Podcasts, or wherever you get your 681 00:36:11,960 --> 00:36:12,720 Speaker 1: podcasts