1 00:00:02,160 --> 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 --> 00:00:18,880 Speaker 1: talk about. Today, we're going to be exploring the ups 6 00:00:18,880 --> 00:00:22,600 Speaker 1: and downs, past and present, personal and universal troubles we 7 00:00:22,680 --> 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 00:00:30,320 --> 00:00:34,080 Speaker 1: especially when dealing with a chronic condition. Getting diagnosed with 10 00:00:34,159 --> 00:00:37,640 Speaker 1: one of these, like psoriasis, can be overwhelming, but you're 11 00:00:37,680 --> 00:00:42,240 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 --> 00:00:51,279 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 --> 00:01:03,480 Speaker 1: about the histay of our skin, you'll find empathetic, transformative 18 00:01:03,480 --> 00:01:10,080 Speaker 1: conversations here on Our Skin. My guest today is Jen Weaver. 19 00:01:10,840 --> 00:01:14,640 Speaker 1: She was diagnosed with rheumatoid arthritis in twenty twelve and 20 00:01:14,680 --> 00:01:19,000 Speaker 1: then psyriasis in twenty seventeen, and she found that her 21 00:01:19,000 --> 00:01:23,039 Speaker 1: diagnoses made her feel really stigmatized and alone. It is 22 00:01:23,080 --> 00:01:26,920 Speaker 1: of course overwhelming to handle any new chronic diagnosis, but 23 00:01:27,040 --> 00:01:29,560 Speaker 1: then one that shows up on your skin can be 24 00:01:29,680 --> 00:01:34,039 Speaker 1: especially hard, and Jen's symptoms were really affecting her life. 25 00:01:34,440 --> 00:01:37,679 Speaker 1: Her doctors worried about infection because of the severity of 26 00:01:37,720 --> 00:01:41,440 Speaker 1: her plaques, which she said covered her head to toe. 27 00:01:42,080 --> 00:01:44,440 Speaker 1: She really had to dial into the right medical help. 28 00:01:44,840 --> 00:01:48,840 Speaker 1: Even specialists like dermatologists prescribed things that didn't help at 29 00:01:48,840 --> 00:01:52,560 Speaker 1: all and in fact made things worse. This trial and 30 00:01:52,680 --> 00:01:56,680 Speaker 1: error treatment is unfortunately something that a lot ofsrias's patients 31 00:01:56,720 --> 00:02:01,680 Speaker 1: go through. But lucky for us, Jeno Action she got 32 00:02:01,720 --> 00:02:04,680 Speaker 1: herself hooked into the online support community and she now 33 00:02:04,760 --> 00:02:08,880 Speaker 1: runs her own community and podcast called My Spooney Sisters, 34 00:02:09,320 --> 00:02:13,160 Speaker 1: and that podcast and community provides resources, a listening ear, 35 00:02:13,280 --> 00:02:17,679 Speaker 1: and understanding to people coping with a chronic diagnosis of illness. 36 00:02:18,280 --> 00:02:20,280 Speaker 1: In our step back into history today, we're going to 37 00:02:20,320 --> 00:02:24,600 Speaker 1: trace the legacy of medical investigation into syriasis. There are 38 00:02:24,639 --> 00:02:27,359 Speaker 1: a few doctors along the way from ancient Greece all 39 00:02:27,400 --> 00:02:29,680 Speaker 1: the way up to the present who have made major 40 00:02:29,800 --> 00:02:33,520 Speaker 1: contributions to our knowledge and understanding of psoriasis. And as 41 00:02:33,520 --> 00:02:38,040 Speaker 1: we know, education busts stigma. So if anyone is the 42 00:02:38,120 --> 00:02:41,440 Speaker 1: right person to talk to about destigmatizing life with psoriasis, 43 00:02:41,480 --> 00:02:45,280 Speaker 1: it is Jen. Any chronic condition that affects our skin 44 00:02:45,400 --> 00:02:48,840 Speaker 1: leaves us vulnerable to feelings of embarrassment or social stigma. 45 00:02:49,120 --> 00:02:52,160 Speaker 1: That is completely understandable, but it is not the way 46 00:02:52,200 --> 00:02:54,440 Speaker 1: it has to be, and Jen is part of leading 47 00:02:54,480 --> 00:02:57,760 Speaker 1: the way to a future where self consciousness and ignorance 48 00:02:57,760 --> 00:03:01,440 Speaker 1: around psoriasis are things of the past. Jen, I am 49 00:03:01,480 --> 00:03:03,400 Speaker 1: so glad to have you here with me today. 50 00:03:03,919 --> 00:03:05,280 Speaker 2: Thank you so much for having me. 51 00:03:05,880 --> 00:03:06,760 Speaker 1: How are you doing. 52 00:03:07,320 --> 00:03:08,160 Speaker 2: I'm doing well. 53 00:03:08,200 --> 00:03:12,160 Speaker 1: How are you I'm great. Welcome to our skin. I 54 00:03:12,200 --> 00:03:14,640 Speaker 1: want to talk to you about your story a little 55 00:03:14,680 --> 00:03:18,400 Speaker 1: bit in detail. So first of all, how old were 56 00:03:18,480 --> 00:03:23,560 Speaker 1: you when you started noticing or discovering changes in your skin? 57 00:03:24,840 --> 00:03:28,600 Speaker 2: I was actually thirty six years old and a mom 58 00:03:28,680 --> 00:03:31,400 Speaker 2: of three early high school kids. 59 00:03:31,760 --> 00:03:35,040 Speaker 1: Oh my goodness. Were you diagnosed right away or were 60 00:03:35,120 --> 00:03:38,040 Speaker 1: you left sort of wondering what was going on and 61 00:03:38,080 --> 00:03:39,280 Speaker 1: pondering what was happening. 62 00:03:39,840 --> 00:03:42,880 Speaker 2: It was actually kind of funny because one day I 63 00:03:42,920 --> 00:03:47,480 Speaker 2: started noticing sores down on my right ankle and going 64 00:03:47,560 --> 00:03:50,160 Speaker 2: up my calf. I showed my husband and he was 65 00:03:50,160 --> 00:03:53,600 Speaker 2: worried I was getting an infection, and so we went 66 00:03:53,640 --> 00:03:55,800 Speaker 2: off to Urgent Care to get it checked out. And 67 00:03:56,000 --> 00:03:58,400 Speaker 2: Urgent Care thought that I had caught some kind of 68 00:03:58,480 --> 00:04:01,320 Speaker 2: infection from either the hot tub or the pool at 69 00:04:01,360 --> 00:04:05,160 Speaker 2: my gym, and so they prescribed some ointments for me. 70 00:04:05,920 --> 00:04:09,040 Speaker 2: No improvement. I did go in to see my family doctor, 71 00:04:09,120 --> 00:04:11,960 Speaker 2: like they asked me to family doctor said the same thing. 72 00:04:13,000 --> 00:04:16,240 Speaker 2: The following month, I went in for my monthly infusion 73 00:04:16,320 --> 00:04:19,840 Speaker 2: with my roomatologist and I showed her what was going on, 74 00:04:19,920 --> 00:04:21,680 Speaker 2: and I said, hey, you know, do we need to 75 00:04:21,720 --> 00:04:25,000 Speaker 2: skip this month's infusion. And as soon as she took 76 00:04:25,000 --> 00:04:26,800 Speaker 2: a look, she said, you know what, I need to 77 00:04:26,839 --> 00:04:29,960 Speaker 2: go consult with a colleague. I will be right back, 78 00:04:30,400 --> 00:04:33,520 Speaker 2: but this is not an infection. You did not get 79 00:04:33,520 --> 00:04:35,920 Speaker 2: this from a pool. And as soon as she left 80 00:04:35,960 --> 00:04:37,440 Speaker 2: the room, my jow just went to the ground and 81 00:04:37,440 --> 00:04:42,000 Speaker 2: I'm like, well, crap, right, Like now what does this mean? 82 00:04:42,080 --> 00:04:43,440 Speaker 2: This does not sound good. 83 00:04:44,320 --> 00:04:46,760 Speaker 1: This is so fascinating to me because you are, as 84 00:04:46,760 --> 00:04:49,000 Speaker 1: she said, you are a mom, you have three kids, 85 00:04:49,040 --> 00:04:51,360 Speaker 1: you're already dealing with a family and taking care of that. 86 00:04:51,880 --> 00:04:55,040 Speaker 1: You already have a chronic illness that you're managing, and 87 00:04:55,080 --> 00:04:58,719 Speaker 1: now you have another complete whammo that came. It sounds 88 00:04:58,760 --> 00:05:01,320 Speaker 1: like out of the blue, since no one else thought 89 00:05:01,480 --> 00:05:03,719 Speaker 1: that this was something in terms of chronic illness, but 90 00:05:03,880 --> 00:05:08,240 Speaker 1: like a one off, treatable situation. How did you deal 91 00:05:08,279 --> 00:05:09,200 Speaker 1: with that mentally? 92 00:05:10,400 --> 00:05:12,760 Speaker 2: You know, mentally, it was really difficult, and I was 93 00:05:12,800 --> 00:05:15,160 Speaker 2: a little freaked out. Of course, when she came back 94 00:05:15,160 --> 00:05:18,320 Speaker 2: in the room, she brought two more rheumatologists with her, 95 00:05:19,200 --> 00:05:21,800 Speaker 2: and so all the red flags, the bells, the whistles, 96 00:05:21,839 --> 00:05:23,919 Speaker 2: everything are going off, and I want to flee that 97 00:05:24,080 --> 00:05:27,240 Speaker 2: very moment. They explained to me that I was in 98 00:05:27,279 --> 00:05:31,160 Speaker 2: the one percent group of people that have an allergic 99 00:05:31,200 --> 00:05:37,440 Speaker 2: reaction to TNF inhibitors. It's a biologic confusion, and that 100 00:05:37,480 --> 00:05:40,440 Speaker 2: one percent of people get postular psoriasis. And so they 101 00:05:40,520 --> 00:05:44,640 Speaker 2: explained that this was no infection. This was actually a 102 00:05:44,680 --> 00:05:48,760 Speaker 2: form of psoriasis that is super rare and painful, and 103 00:05:48,880 --> 00:05:51,320 Speaker 2: they describe it kind of like a burn from the 104 00:05:51,320 --> 00:05:52,480 Speaker 2: inside out. 105 00:05:53,480 --> 00:05:57,400 Speaker 1: I have to imagine dealing with your already heavy responsibility 106 00:05:57,440 --> 00:06:01,320 Speaker 1: load and then getting this whole new die nosis had 107 00:06:01,360 --> 00:06:04,560 Speaker 1: to have felt a little bit isolating in addition to 108 00:06:04,640 --> 00:06:07,320 Speaker 1: just having a thing on your skin that you probably 109 00:06:07,320 --> 00:06:11,200 Speaker 1: felt weird about. Can you tell us about how dealing 110 00:06:11,240 --> 00:06:13,719 Speaker 1: with that and then living with psoriasis as you've learned 111 00:06:13,760 --> 00:06:17,760 Speaker 1: more about your unique situation has played out, and how again, 112 00:06:17,839 --> 00:06:20,080 Speaker 1: because you are a mom that takes care of other people, 113 00:06:20,520 --> 00:06:23,960 Speaker 1: how others around you have dealt with your skin issues. 114 00:06:24,960 --> 00:06:26,839 Speaker 2: So first of all, you know, like I said, it 115 00:06:26,880 --> 00:06:29,000 Speaker 2: started down on my ankle, in my calf, and it 116 00:06:29,080 --> 00:06:31,680 Speaker 2: quickly spread. And so as they're trying to figure out 117 00:06:31,680 --> 00:06:33,960 Speaker 2: what medications to treat me with, they send me to 118 00:06:34,040 --> 00:06:37,120 Speaker 2: a dermatologist and I'm seeing more and more of these 119 00:06:37,160 --> 00:06:39,599 Speaker 2: plaques pop up. And now they're all up and down 120 00:06:39,600 --> 00:06:41,560 Speaker 2: my legs, they're on the bottom of my feet, they're 121 00:06:41,600 --> 00:06:44,039 Speaker 2: on the palms of my hands. They hadn't hit my 122 00:06:44,080 --> 00:06:47,600 Speaker 2: scalp yet. The dermatologist gives me some kind of spray. 123 00:06:48,080 --> 00:06:51,760 Speaker 2: It felt like pouring acid on my skin. It was horrible. 124 00:06:51,880 --> 00:06:54,680 Speaker 2: I don't recommend this to anyone, and he just kept 125 00:06:54,720 --> 00:06:57,040 Speaker 2: recommending more and more things, and every single time it's like, 126 00:06:57,080 --> 00:06:59,279 Speaker 2: this is not working, this is not helping. So I 127 00:06:59,320 --> 00:07:02,160 Speaker 2: talked to my rooms again, and at this point it's like, 128 00:07:02,279 --> 00:07:04,200 Speaker 2: how do I even go to a hairdresser. I don't 129 00:07:04,200 --> 00:07:06,039 Speaker 2: want them looking at me. I don't want people looking 130 00:07:06,120 --> 00:07:09,560 Speaker 2: at me like I'm some lepper and disgusting. That was 131 00:07:09,600 --> 00:07:11,560 Speaker 2: the biggest thing, is that you get in your own 132 00:07:11,680 --> 00:07:14,440 Speaker 2: head about what everyone is going to say, and you 133 00:07:14,480 --> 00:07:17,040 Speaker 2: start making up all these thoughts of what everyone's going 134 00:07:17,040 --> 00:07:19,360 Speaker 2: to be thinking of you, and then you go out 135 00:07:19,400 --> 00:07:23,040 Speaker 2: in the public, and you know, you get some weird looks. 136 00:07:23,640 --> 00:07:26,040 Speaker 2: The nel salon was definitely hard because a lot of 137 00:07:26,040 --> 00:07:28,360 Speaker 2: them they want you to put on hand sanitizer before 138 00:07:28,400 --> 00:07:31,040 Speaker 2: they touch you, and I'm like, no, this is gonna 139 00:07:31,080 --> 00:07:33,200 Speaker 2: hurt me. No, thank you, I promise you. I don't 140 00:07:33,240 --> 00:07:35,720 Speaker 2: have anything I'm going to give to you. It's all 141 00:07:35,760 --> 00:07:37,360 Speaker 2: I can do to even be here seeing in front 142 00:07:37,400 --> 00:07:40,160 Speaker 2: of you right now. So it's just it was that 143 00:07:40,240 --> 00:07:42,520 Speaker 2: it was a lot of that everywhere you go. The 144 00:07:42,600 --> 00:07:45,640 Speaker 2: poor me looks that I'm getting from everyone, the people 145 00:07:45,680 --> 00:07:47,880 Speaker 2: reaching out, oh is there anything I can do to help? 146 00:07:48,040 --> 00:07:50,480 Speaker 2: Is there anything that helps you? And just the sad 147 00:07:50,720 --> 00:07:52,320 Speaker 2: pity looks. I just couldn't handle that. 148 00:07:53,120 --> 00:07:57,000 Speaker 1: Right. This is interesting because we've been talking about you know, 149 00:07:57,120 --> 00:08:00,040 Speaker 1: kind of the outward things that you were doing to cope. 150 00:08:00,120 --> 00:08:03,480 Speaker 1: But I'm really curious what your internal monologue was, Like, 151 00:08:03,560 --> 00:08:07,000 Speaker 1: what sort of self talk were you using. Obviously a 152 00:08:07,000 --> 00:08:09,880 Speaker 1: lot of people talk about feeling outcast, and you already 153 00:08:09,880 --> 00:08:12,520 Speaker 1: mentioned like knowing people are looking at you and forming 154 00:08:12,520 --> 00:08:15,920 Speaker 1: their own opinions about what's going on. What was that 155 00:08:16,040 --> 00:08:17,720 Speaker 1: mental journey in the beginning, like for. 156 00:08:17,720 --> 00:08:20,080 Speaker 2: You, Oh gosh, I think the mental journey was all 157 00:08:20,120 --> 00:08:22,400 Speaker 2: over the place. Lucky for me that I had friends 158 00:08:22,400 --> 00:08:24,560 Speaker 2: and family that were so close to me that they 159 00:08:24,600 --> 00:08:26,560 Speaker 2: would just really sit down and remind me that, like, 160 00:08:26,640 --> 00:08:28,800 Speaker 2: I didn't ask for this, I didn't choose this. My 161 00:08:28,800 --> 00:08:32,719 Speaker 2: immune system hates me. It's attacking me. There's not much 162 00:08:32,760 --> 00:08:34,880 Speaker 2: you could do about that. You just have to remind 163 00:08:34,880 --> 00:08:39,000 Speaker 2: yourself that you're doing all the right things, and whatever 164 00:08:39,040 --> 00:08:42,040 Speaker 2: people are thinking in their head about you, it's all 165 00:08:42,080 --> 00:08:44,720 Speaker 2: on them. It's not my business what they're thinking of me. Anyway, 166 00:08:44,760 --> 00:08:47,000 Speaker 2: as long as it's not my business, then I don't hurt. 167 00:08:47,679 --> 00:08:50,079 Speaker 1: I think that's probably the healthiest way you can consider 168 00:08:50,120 --> 00:08:52,720 Speaker 1: the whole thing. And what I love is that you 169 00:08:52,840 --> 00:08:55,800 Speaker 1: then turned this really into a positive because you now 170 00:08:55,920 --> 00:09:00,200 Speaker 1: run this online community and podcast my Spooney Sisters. So 171 00:09:00,280 --> 00:09:03,560 Speaker 1: just in case our listeners have never heard this particular thing, 172 00:09:03,920 --> 00:09:06,480 Speaker 1: can you explain why spoons are in the name. 173 00:09:07,200 --> 00:09:10,120 Speaker 2: Of course, I don't know when this actually started, but 174 00:09:10,200 --> 00:09:14,520 Speaker 2: there was a famous in our world blogger named Christine Meiserndino, 175 00:09:15,160 --> 00:09:18,520 Speaker 2: and she was a patient with lupus. She was out 176 00:09:18,600 --> 00:09:20,880 Speaker 2: to lunch with a friend. Wanted to explain to her 177 00:09:20,960 --> 00:09:23,240 Speaker 2: friend what it was like living with a chronic illness. 178 00:09:23,760 --> 00:09:25,880 Speaker 2: So she went and gathered up a bunch of spoons 179 00:09:26,000 --> 00:09:29,760 Speaker 2: off of the nearby tables, and she said, these represent 180 00:09:30,200 --> 00:09:33,240 Speaker 2: my energy for the day. And on a typical day, 181 00:09:33,320 --> 00:09:35,080 Speaker 2: I'm not sure how many spoons I'm going to start 182 00:09:35,080 --> 00:09:37,439 Speaker 2: out with. It depends on what I maybe ate the 183 00:09:37,520 --> 00:09:40,560 Speaker 2: day before or how I slept, but all of these 184 00:09:40,640 --> 00:09:43,960 Speaker 2: represent that and each task that I do is going 185 00:09:44,000 --> 00:09:45,880 Speaker 2: to take some of that energy. So you know, she's 186 00:09:45,920 --> 00:09:48,560 Speaker 2: holding up ten spoons. She's saying, Okay, I took a 187 00:09:48,600 --> 00:09:52,120 Speaker 2: shower today. That's a spoon. That kind of brought in 188 00:09:52,240 --> 00:09:56,240 Speaker 2: the term spoon theory, and now people use the word 189 00:09:56,280 --> 00:10:00,560 Speaker 2: spoony all the time for different things, and I think, Okay, 190 00:10:00,640 --> 00:10:03,559 Speaker 2: this is my community of spoonies, and I want to 191 00:10:03,600 --> 00:10:05,840 Speaker 2: talk to my sisters about what they're going through. So 192 00:10:06,440 --> 00:10:08,400 Speaker 2: my spoony sisters, I love it. 193 00:10:08,920 --> 00:10:12,320 Speaker 1: I also want to know how this community developed, because 194 00:10:12,960 --> 00:10:16,240 Speaker 1: it's grown very quickly, and I'm curious how people found you. 195 00:10:16,920 --> 00:10:19,640 Speaker 1: Were these mostly people that were recently diagnosed and were 196 00:10:19,679 --> 00:10:22,640 Speaker 1: on the hunt for resources. What were the avenues that 197 00:10:22,679 --> 00:10:23,560 Speaker 1: got people to gen? 198 00:10:24,200 --> 00:10:27,560 Speaker 2: Okay, So a few years ago I met this amazing girl. 199 00:10:27,600 --> 00:10:30,480 Speaker 2: Her name is Chelsea, and she had started a podcast 200 00:10:30,520 --> 00:10:33,160 Speaker 2: called Miammune System Hates Me and I was a guest 201 00:10:33,200 --> 00:10:37,280 Speaker 2: on her podcast. Well, two years later, she decided, you 202 00:10:37,320 --> 00:10:38,960 Speaker 2: know what, I'm going to get back to my dancing 203 00:10:39,000 --> 00:10:40,959 Speaker 2: career and my life and I'm I'm going to cancel 204 00:10:41,040 --> 00:10:43,520 Speaker 2: this podcast. And I kind of went into, oh, no, 205 00:10:43,720 --> 00:10:45,960 Speaker 2: you know, all these new people out there, they need something, 206 00:10:46,040 --> 00:10:48,880 Speaker 2: and that's kind of what sparked the interest and the desire. 207 00:10:49,400 --> 00:10:52,440 Speaker 2: And I'd already been doing a lot of fun, silly 208 00:10:52,480 --> 00:10:55,200 Speaker 2: things with her and the other people in our support group. 209 00:10:55,520 --> 00:10:58,160 Speaker 2: I would have them send me little clips of them 210 00:10:58,240 --> 00:11:01,160 Speaker 2: tossing spoons, and so we'd put this together and always 211 00:11:01,160 --> 00:11:03,080 Speaker 2: look like we were tossing spoons to each other for 212 00:11:03,360 --> 00:11:06,000 Speaker 2: like a reel or a TikTok, and so we just 213 00:11:06,040 --> 00:11:08,800 Speaker 2: decided to keep on doing that and then I started 214 00:11:08,800 --> 00:11:12,120 Speaker 2: the podcast. Next thing, I know, more and more people 215 00:11:12,200 --> 00:11:15,480 Speaker 2: are referring people to me or somehow finding me, and 216 00:11:15,520 --> 00:11:18,760 Speaker 2: this whole community is born. And we still do spoon 217 00:11:18,800 --> 00:11:21,600 Speaker 2: toss reels. We even do walking reels to show that, like, 218 00:11:21,960 --> 00:11:23,520 Speaker 2: you need to get out there and move. You need 219 00:11:23,559 --> 00:11:25,880 Speaker 2: to move that body because you need to lubricate those 220 00:11:25,920 --> 00:11:28,679 Speaker 2: joints and it's super important. And yeah, people just come 221 00:11:28,720 --> 00:11:30,000 Speaker 2: out of the woodwork and find me. I don't know 222 00:11:30,000 --> 00:11:32,120 Speaker 2: if they find me through the podcast or what, but 223 00:11:32,480 --> 00:11:33,720 Speaker 2: somehow they do if they find me. 224 00:11:35,160 --> 00:11:39,280 Speaker 1: Obviously, people who have been diagnosed are seeking out this information. 225 00:11:39,400 --> 00:11:41,840 Speaker 1: I'm curious. Do you also find that you get a 226 00:11:41,840 --> 00:11:45,120 Speaker 1: lot of friends and families of patients that are seeking 227 00:11:45,160 --> 00:11:46,240 Speaker 1: you out for help as well? 228 00:11:46,520 --> 00:11:50,640 Speaker 2: Not necessarily friends and families, but definitely newly diagnosed or 229 00:11:50,720 --> 00:11:53,079 Speaker 2: even friends of my own. You know, I've had people 230 00:11:53,120 --> 00:11:55,120 Speaker 2: reach out to me recently saying, you know, I'm on 231 00:11:55,200 --> 00:11:58,800 Speaker 2: the path of getting diagnosed with POTS or soriatic arthritis. 232 00:11:59,400 --> 00:12:01,319 Speaker 2: What kind of information do you happen to know or 233 00:12:01,320 --> 00:12:03,320 Speaker 2: who can you put me in touch with? And that's 234 00:12:03,320 --> 00:12:06,480 Speaker 2: what I do. Recently, I partnered up with a friend 235 00:12:06,480 --> 00:12:09,160 Speaker 2: of mine and we created what's called the Spoony Directory, 236 00:12:09,600 --> 00:12:11,400 Speaker 2: and I reached out and I said, Okay, if you 237 00:12:11,440 --> 00:12:14,560 Speaker 2: are a spoony professional, if you offer services of any 238 00:12:14,640 --> 00:12:18,680 Speaker 2: kind or even content creation teaching people about things, I 239 00:12:18,720 --> 00:12:21,160 Speaker 2: want you in our spoony directory because I want people 240 00:12:21,160 --> 00:12:23,880 Speaker 2: to be able to find you for what they're looking for. 241 00:12:23,920 --> 00:12:26,439 Speaker 2: If it's a certain diagnosis or a thing they need, 242 00:12:26,520 --> 00:12:27,760 Speaker 2: I want them to be able to find you. 243 00:12:28,240 --> 00:12:29,920 Speaker 1: We are going to talk in just a little bit 244 00:12:30,000 --> 00:12:34,320 Speaker 1: about the history of stigma aroundsiasis in particular, and one 245 00:12:34,360 --> 00:12:37,319 Speaker 1: thing that history makes clear is that education is really 246 00:12:37,400 --> 00:12:41,640 Speaker 1: what shifts the needle in terms of de stigmatization. You 247 00:12:41,720 --> 00:12:44,920 Speaker 1: offer all of these amazing resources with my spoony sisters. 248 00:12:45,559 --> 00:12:48,400 Speaker 1: How have you seen, because I'm sure it gets back 249 00:12:48,440 --> 00:12:50,960 Speaker 1: to you how this is helping people. Education and the 250 00:12:51,000 --> 00:12:53,600 Speaker 1: resources you offer help people in that community. 251 00:12:54,280 --> 00:12:57,640 Speaker 2: Yeah. Absolutely, you know. I've received cards from people or 252 00:12:57,679 --> 00:12:59,800 Speaker 2: what we call happy mail. Happy mail is when you 253 00:12:59,800 --> 00:13:02,760 Speaker 2: get something that's not a bill and not junk, which 254 00:13:02,800 --> 00:13:05,360 Speaker 2: is wonderful. We all love that. And even just people 255 00:13:05,360 --> 00:13:08,320 Speaker 2: direct messaging me and I tell you they always like 256 00:13:08,360 --> 00:13:13,079 Speaker 2: to make my eyes sweat. I love all the wonderful things. 257 00:13:13,120 --> 00:13:14,840 Speaker 2: I mean, it could be something as simple as I 258 00:13:14,880 --> 00:13:18,280 Speaker 2: tell people my favorite lotion that I recommend for anyone 259 00:13:18,320 --> 00:13:21,360 Speaker 2: with psoriasis or even just any kind of skin issue 260 00:13:21,720 --> 00:13:25,560 Speaker 2: is called Utterbalm of all Things. I find it on Amazalt. Yeah, 261 00:13:25,600 --> 00:13:28,080 Speaker 2: it's wonderful. I get it on Amazon. It's like six bucks. 262 00:13:28,280 --> 00:13:32,880 Speaker 2: It's wonderful. It's soothing, it doesn't hurt. And so, you know, 263 00:13:32,960 --> 00:13:35,280 Speaker 2: I get people all the time replying and saying I 264 00:13:35,320 --> 00:13:38,040 Speaker 2: finally tried this and it's helping, and it works so much, 265 00:13:38,040 --> 00:13:40,320 Speaker 2: and my hands are on fire anymore. I mean as 266 00:13:40,360 --> 00:13:42,439 Speaker 2: things like that that always they make my eyes wet. 267 00:13:42,480 --> 00:13:45,280 Speaker 1: I love it. We have seen. It's no secret a 268 00:13:45,320 --> 00:13:49,400 Speaker 1: lot of people will be sometimes when they're dealing with something, 269 00:13:49,400 --> 00:13:53,200 Speaker 1: particularly on their skin, something that's visible, a little slow 270 00:13:53,280 --> 00:13:55,640 Speaker 1: to go get it checked out and diagnosed. It sounds 271 00:13:55,640 --> 00:13:57,319 Speaker 1: like you were pretty quick on the ball about it. 272 00:13:57,600 --> 00:13:59,480 Speaker 2: It was pretty quick, and a lot of it is, 273 00:13:59,520 --> 00:14:02,720 Speaker 2: you know, when you're on infusion medications. These are big, powerful, 274 00:14:02,720 --> 00:14:04,640 Speaker 2: strong ones. You know, some people are on like low 275 00:14:04,679 --> 00:14:07,600 Speaker 2: dose chemos or whatever, and the doctors always tell you 276 00:14:07,640 --> 00:14:09,760 Speaker 2: they want they want to know, because if you have 277 00:14:09,920 --> 00:14:13,560 Speaker 2: any kind of infection whatsoever, you can't have it. You're 278 00:14:13,600 --> 00:14:17,360 Speaker 2: already lowering your immune system as it is, and so 279 00:14:17,559 --> 00:14:20,640 Speaker 2: we have to monitor that stuff heavily. And so that's 280 00:14:20,640 --> 00:14:22,560 Speaker 2: part of why I went in. I think if I 281 00:14:22,560 --> 00:14:25,240 Speaker 2: wouldn't have been on infusions at the time, I probably 282 00:14:25,240 --> 00:14:27,120 Speaker 2: would have like just blown it off and thought, you know, 283 00:14:27,360 --> 00:14:28,680 Speaker 2: I got a bug bite or something. 284 00:14:29,680 --> 00:14:31,920 Speaker 1: Do you run into that with people in your community 285 00:14:31,920 --> 00:14:33,600 Speaker 1: where people show up and they're like, well, I think 286 00:14:33,640 --> 00:14:35,920 Speaker 1: I might have this, but I'm not sure, And how 287 00:14:35,920 --> 00:14:37,680 Speaker 1: do you deal with those situations? 288 00:14:38,040 --> 00:14:40,360 Speaker 2: Every single time I tell people, you know, I'm not 289 00:14:40,440 --> 00:14:43,280 Speaker 2: a doctor, I'm not a professional, but I will give 290 00:14:43,280 --> 00:14:45,440 Speaker 2: you my personal opinion if you're open to it. And 291 00:14:45,520 --> 00:14:48,760 Speaker 2: my personal opinion is go seek out the doctor that 292 00:14:48,800 --> 00:14:51,280 Speaker 2: you need or the specialists that you need immediately, because 293 00:14:51,640 --> 00:14:54,760 Speaker 2: when you don't take it seriously, that's a scary thing. 294 00:14:54,800 --> 00:14:55,880 Speaker 2: It could be very serious. 295 00:14:56,360 --> 00:14:58,800 Speaker 1: Jim, I'm so grateful for you for sharing your story 296 00:14:58,840 --> 00:15:01,480 Speaker 1: with us, and that when we come back after we 297 00:15:01,480 --> 00:15:02,880 Speaker 1: have a little break, we are going to meet the 298 00:15:03,040 --> 00:15:07,680 Speaker 1: very earliest pioneers in dermatology who debunked some very misguided 299 00:15:07,680 --> 00:15:11,200 Speaker 1: beliefs about skin disorders and started us on a journey 300 00:15:11,200 --> 00:15:15,800 Speaker 1: to really understand what happens on our skin. Hang tight 301 00:15:15,840 --> 00:15:33,280 Speaker 1: because we have more in a minute, welcome back to 302 00:15:33,440 --> 00:15:37,320 Speaker 1: our skin. So how do we know what we know 303 00:15:37,560 --> 00:15:40,400 Speaker 1: about psoriasis? There was a time when there was no 304 00:15:40,520 --> 00:15:44,520 Speaker 1: way to differentiate among different skin conditions. As long as 305 00:15:44,520 --> 00:15:47,520 Speaker 1: symptoms look the same, people just sort of assumed what 306 00:15:47,640 --> 00:15:50,760 Speaker 1: was going on. But just because something presents the same 307 00:15:50,760 --> 00:15:54,440 Speaker 1: way as another condition does, just because the symptoms might match, 308 00:15:54,760 --> 00:15:58,080 Speaker 1: that doesn't mean it's the same condition. It certainly doesn't 309 00:15:58,080 --> 00:16:01,160 Speaker 1: mean they should be medically treated in the way. Yet 310 00:16:01,240 --> 00:16:04,480 Speaker 1: that is exactly what happened for hundreds of years until 311 00:16:04,520 --> 00:16:07,520 Speaker 1: the doctors that we'll talk about today made their contributions. 312 00:16:08,200 --> 00:16:11,320 Speaker 1: So this topic is incredibly important as chronic skin conditions 313 00:16:11,320 --> 00:16:15,080 Speaker 1: affect millions of people worldwide, and the social implications are 314 00:16:15,600 --> 00:16:19,320 Speaker 1: as we've heard in talking to Jen profound soriasis is 315 00:16:19,360 --> 00:16:22,800 Speaker 1: not just a physical condition. It impacts social interactions, it 316 00:16:22,880 --> 00:16:26,400 Speaker 1: impacts mental health. There have been a lot of misconceptions 317 00:16:26,400 --> 00:16:29,520 Speaker 1: about the cause of psoriasis over the years. In a 318 00:16:29,560 --> 00:16:32,720 Speaker 1: previous episode of this podcast, we spoke with Olympian Mandy 319 00:16:32,760 --> 00:16:36,280 Speaker 1: Marquart about her experiences, and she opened up about the 320 00:16:36,320 --> 00:16:40,080 Speaker 1: isolation she felt being on the world stage with pariasis 321 00:16:40,200 --> 00:16:44,360 Speaker 1: because it's a visible illness and it often leads to stigmatization. 322 00:16:45,200 --> 00:16:48,600 Speaker 1: People once believe that syriasis was caused by things like 323 00:16:48,640 --> 00:16:53,800 Speaker 1: blood disorders, allergies, poor hygiene, or no joke, just straight 324 00:16:53,880 --> 00:16:58,120 Speaker 1: up being a bad person. Jen, It is not uncommon 325 00:16:58,240 --> 00:17:01,880 Speaker 1: for some of those stigmas about the causes of psoriasis 326 00:17:01,920 --> 00:17:03,280 Speaker 1: to persist today, right. 327 00:17:03,600 --> 00:17:06,080 Speaker 2: Yeah, absolutely, apparently I'm just bad to the bone. 328 00:17:06,160 --> 00:17:07,959 Speaker 1: You've thrown a very evil vibe already. 329 00:17:08,000 --> 00:17:12,240 Speaker 2: I have to tell you, Oh you don't you know it? 330 00:17:12,720 --> 00:17:15,560 Speaker 1: I mean, can you imagine had you been in that 331 00:17:15,680 --> 00:17:18,080 Speaker 1: doctor's office with a bunch of specialists showing up and 332 00:17:18,119 --> 00:17:20,359 Speaker 1: them going, we think you might be morally corrupt, and 333 00:17:20,400 --> 00:17:21,440 Speaker 1: this is what's happened. 334 00:17:21,520 --> 00:17:23,520 Speaker 2: Oh my gosh, I think I would be waiting to 335 00:17:23,520 --> 00:17:26,160 Speaker 2: be on some kind of exorcist movie at that point. 336 00:17:26,000 --> 00:17:28,960 Speaker 1: Right, You're like, where are the punked cameras? What's going on? 337 00:17:29,160 --> 00:17:32,879 Speaker 1: Thankfully we have moved beyond it, but those misconceptions have 338 00:17:33,160 --> 00:17:36,280 Speaker 1: very deep historical roots. In that same episode I just 339 00:17:36,359 --> 00:17:39,919 Speaker 1: mentioned with Mandy Marquart, we covered the inhumane ways that 340 00:17:39,960 --> 00:17:43,240 Speaker 1: people with chronic skin conditions like pariasis have been treated 341 00:17:43,280 --> 00:17:46,960 Speaker 1: throughout history. Sometimes people with skin conditions were forced to 342 00:17:47,000 --> 00:17:50,080 Speaker 1: carry around a bell to announce their presence so people 343 00:17:50,160 --> 00:17:52,679 Speaker 1: knew they were coming and to get away, and to 344 00:17:52,760 --> 00:17:56,600 Speaker 1: wear special clothing to distinguish them in public. This is 345 00:17:56,600 --> 00:18:01,400 Speaker 1: because people often vary incorrectly assumed that basis was contagious, 346 00:18:01,760 --> 00:18:04,280 Speaker 1: but it also reflected the beliefs of the day that 347 00:18:04,400 --> 00:18:07,399 Speaker 1: illness was the result of the patient's failing or of 348 00:18:07,440 --> 00:18:10,719 Speaker 1: being a bad person. That's something you mentioned as your 349 00:18:10,760 --> 00:18:12,960 Speaker 1: friends and family supporting you, that they were like, you 350 00:18:13,000 --> 00:18:15,399 Speaker 1: didn't ask for this. This is just a thing that 351 00:18:15,480 --> 00:18:18,399 Speaker 1: your body has decided. So thank you for making that 352 00:18:18,440 --> 00:18:22,119 Speaker 1: a very present aspect of this story. Some psoriasis patients 353 00:18:22,119 --> 00:18:25,119 Speaker 1: in history were forced, or if you want to be 354 00:18:25,200 --> 00:18:28,040 Speaker 1: very kind about it, encouraged, to move away from their 355 00:18:28,080 --> 00:18:31,480 Speaker 1: family and friends into communities where everyone had a chronic illness. 356 00:18:32,080 --> 00:18:34,080 Speaker 1: Exactly what you need when you're ill is to have 357 00:18:34,119 --> 00:18:36,879 Speaker 1: your support system taken away. I think any of us 358 00:18:36,920 --> 00:18:39,720 Speaker 1: can imagine the level of isolation and shame that would 359 00:18:39,720 --> 00:18:42,879 Speaker 1: be associated with that. As you'll notice, I mentioned that 360 00:18:42,960 --> 00:18:45,840 Speaker 1: a lot of people with lots of different visible conditions 361 00:18:45,840 --> 00:18:49,560 Speaker 1: suffered this exact same treatment. Generally, particularly in the fifteen 362 00:18:49,640 --> 00:18:53,360 Speaker 1: hundreds or sixteen hundreds, people did not distinguish between conditions 363 00:18:53,400 --> 00:18:57,120 Speaker 1: like psoriasis and conditions that actually might have been contagious 364 00:18:57,160 --> 00:19:00,080 Speaker 1: and potentially would have needed some sort of quarantine to 365 00:19:00,119 --> 00:19:02,439 Speaker 1: get them under control. I'm sure everyone is thinking the 366 00:19:02,440 --> 00:19:05,960 Speaker 1: first thing, leprosy. Yes, that might have merited that behavior. 367 00:19:06,520 --> 00:19:10,080 Speaker 1: Back then, when medicine was really just starting to become professionalized, 368 00:19:10,160 --> 00:19:13,440 Speaker 1: doctors made a whole lot of assumptions about people's conditions 369 00:19:13,480 --> 00:19:16,600 Speaker 1: just based on site. And of course, the assumption that 370 00:19:16,640 --> 00:19:20,359 Speaker 1: a skin condition was linked to a sinful soul definitely, 371 00:19:20,400 --> 00:19:24,040 Speaker 1: definitely would have been a huge barrier to compassionate treatment. 372 00:19:24,640 --> 00:19:27,920 Speaker 1: But since medicine began, some doctors were trying to take 373 00:19:28,040 --> 00:19:31,800 Speaker 1: an evidence based and scientific approach to treating skin conditions. 374 00:19:32,440 --> 00:19:35,680 Speaker 1: The efforts were still very rudimentary by today's standards, but 375 00:19:35,720 --> 00:19:39,320 Speaker 1: at least they weren't just advocating for making people isolate 376 00:19:39,359 --> 00:19:42,440 Speaker 1: themselves if they had even a minor skin condition. We're 377 00:19:42,480 --> 00:19:45,399 Speaker 1: going to talk about Maman Hippocrates, who lived in the 378 00:19:45,400 --> 00:19:48,880 Speaker 1: third and fourth centuries BCE, and he's widely recognized as 379 00:19:48,920 --> 00:19:52,960 Speaker 1: the first medical professional to separate different types of skin 380 00:19:53,040 --> 00:19:58,399 Speaker 1: conditions into categories. Those categories were sora such as psoriasis, 381 00:19:58,600 --> 00:20:02,359 Speaker 1: Those were any conditions that we itchy lepra, which referred 382 00:20:02,359 --> 00:20:05,880 Speaker 1: to symptoms that made the skin scaly, and lichen, which 383 00:20:05,920 --> 00:20:09,760 Speaker 1: described skin growths. A couple of hundred years later, in 384 00:20:09,840 --> 00:20:14,440 Speaker 1: about two hundred BCE, Dalen of Pergamon, another Greek physician, 385 00:20:14,720 --> 00:20:19,520 Speaker 1: surgeon and philosopher, coined the term psoriasis. So we'll get 386 00:20:19,520 --> 00:20:22,840 Speaker 1: into the treatment of psoriasis in those ancient times in 387 00:20:22,880 --> 00:20:26,160 Speaker 1: another episode, but suffice it to say they were real experimental. 388 00:20:26,720 --> 00:20:30,280 Speaker 1: There was a lot of slathering on of various tars, 389 00:20:30,720 --> 00:20:32,920 Speaker 1: laying out in the sun for long periods of time, 390 00:20:33,520 --> 00:20:37,320 Speaker 1: and literal snake oil pretty gnarly. So that is basically 391 00:20:37,400 --> 00:20:41,280 Speaker 1: where things stood for hundreds and hundreds of years. Ify 392 00:20:41,400 --> 00:20:44,920 Speaker 1: invasive treatments with just a ton of side effects in 393 00:20:44,920 --> 00:20:48,040 Speaker 1: addition to the social stigmatization that was already part of 394 00:20:48,040 --> 00:20:51,480 Speaker 1: the problem. It was rough, and the journey to begin 395 00:20:51,640 --> 00:20:56,800 Speaker 1: destigmatizing psoriasis, studying the illness scientifically and distinguishing it from 396 00:20:56,920 --> 00:21:01,760 Speaker 1: other more contagious skin conditions really gained Listen I'm not 397 00:21:01,800 --> 00:21:04,760 Speaker 1: a pun person, but it was with industrialization, so that 398 00:21:04,920 --> 00:21:08,879 Speaker 1: was actually purposeful. In the early nineteenth century, in the 399 00:21:08,920 --> 00:21:12,680 Speaker 1: early eighteen hundreds, likely eighteen o eight or eighteen oh nine, 400 00:21:12,720 --> 00:21:16,080 Speaker 1: there was a British physician named doctor Robert Willin who 401 00:21:16,080 --> 00:21:19,760 Speaker 1: published a book on cutaneous diseases, which was a huge 402 00:21:19,840 --> 00:21:24,840 Speaker 1: leap forward in distinguishing siasis from other similar skin disorders. 403 00:21:25,240 --> 00:21:29,280 Speaker 1: He actually wanted to distinguish and catalog these illnesses so 404 00:21:29,320 --> 00:21:32,359 Speaker 1: that they could be treated in ways that were specific 405 00:21:32,480 --> 00:21:35,639 Speaker 1: to the needs of different patients. Everybody was not getting 406 00:21:35,720 --> 00:21:38,760 Speaker 1: the same thing. Willin was one of the first doctors 407 00:21:38,760 --> 00:21:42,040 Speaker 1: to specialize in treating skin conditions, making him one of 408 00:21:42,040 --> 00:21:45,880 Speaker 1: the fathers of the modern specialty of dermatology. So, Jen, 409 00:21:46,000 --> 00:21:49,280 Speaker 1: having taken in all of this somewhat wacky history, does 410 00:21:49,280 --> 00:21:52,320 Speaker 1: it surprise you that it took from two hundred BCE 411 00:21:53,240 --> 00:21:57,199 Speaker 1: to the nineteenth century, so more than two thousand years 412 00:21:57,520 --> 00:22:00,879 Speaker 1: to get an understanding of what priasis actually is. 413 00:22:01,600 --> 00:22:04,720 Speaker 2: It's not surprising and as surprising. Does that make sense? Yes, 414 00:22:05,760 --> 00:22:07,680 Speaker 2: you know, I mean we look back and I mean 415 00:22:07,680 --> 00:22:09,600 Speaker 2: look at the crazy things they did and the chopping 416 00:22:09,640 --> 00:22:12,119 Speaker 2: of the heads that they did back then. I'm surprised 417 00:22:12,160 --> 00:22:13,760 Speaker 2: that we even got to keep our skin. 418 00:22:14,960 --> 00:22:18,600 Speaker 1: We're just gonna try full body flailing and see what happens. 419 00:22:19,119 --> 00:22:22,280 Speaker 1: We're just gonna do that. Yeah, it's pretty fascinating to 420 00:22:22,320 --> 00:22:27,040 Speaker 1: consider that during that time, how many scores of people 421 00:22:27,200 --> 00:22:30,880 Speaker 1: suffered because no one in the medical community was like, wait, 422 00:22:30,960 --> 00:22:34,040 Speaker 1: I think, do you remember how hippocrites thought these might 423 00:22:34,080 --> 00:22:37,040 Speaker 1: be different things? He wasn't quite onto what was the 424 00:22:37,080 --> 00:22:39,800 Speaker 1: correct way to delineate them. But it took that long 425 00:22:39,840 --> 00:22:42,320 Speaker 1: for anybody to go back to the idea. Fascinating. 426 00:22:42,640 --> 00:22:44,880 Speaker 2: Yeah, to go from his point to where we are now, 427 00:22:45,040 --> 00:22:46,280 Speaker 2: I can't believe it took so long. 428 00:22:47,680 --> 00:22:52,240 Speaker 1: Thank goodness, somebody finally got the message. There is another 429 00:22:52,320 --> 00:22:54,920 Speaker 1: major figure in the development of dermatology I want to 430 00:22:54,960 --> 00:22:57,840 Speaker 1: talk about that is a contemporary of Villains. That was 431 00:22:57,880 --> 00:23:02,440 Speaker 1: an Austrian dermatologist named von Hebra And he made several 432 00:23:02,480 --> 00:23:06,159 Speaker 1: important discoveries. But for our purposes as we look at 433 00:23:06,200 --> 00:23:09,879 Speaker 1: stigma against skin conditions, his most important discovery may have 434 00:23:10,000 --> 00:23:15,240 Speaker 1: been definitively classifying sariasis as a condition that was separate 435 00:23:15,320 --> 00:23:18,800 Speaker 1: and different from leprosy. And this was a crucial step 436 00:23:18,880 --> 00:23:22,720 Speaker 1: in changing public perception because these two illnesses had, as 437 00:23:22,720 --> 00:23:25,680 Speaker 1: we've been saying, been confused for each other basically since 438 00:23:25,720 --> 00:23:28,720 Speaker 1: the beginning of time, even though that we know now 439 00:23:28,760 --> 00:23:32,479 Speaker 1: that their treatment and their level of contagion completely different. 440 00:23:33,040 --> 00:23:36,040 Speaker 1: Von Hebra founded the Vienna School of Dermatology when he 441 00:23:36,080 --> 00:23:38,240 Speaker 1: was still a very young man in his thirties, and 442 00:23:38,359 --> 00:23:41,280 Speaker 1: his efforts trained lots of other doctors to think more 443 00:23:41,320 --> 00:23:46,320 Speaker 1: methodically about skin conditions. So understanding of psoriasis and social 444 00:23:46,320 --> 00:23:51,960 Speaker 1: acceptance have indeed thankfully improved over time, but there's still 445 00:23:52,000 --> 00:23:55,639 Speaker 1: a lot of lingering social stigma, especially the misconception that 446 00:23:55,720 --> 00:23:59,080 Speaker 1: sariasis is contagious. I love that you mentioned that when 447 00:23:59,080 --> 00:24:00,840 Speaker 1: you went to get your name done you had to 448 00:24:00,920 --> 00:24:04,120 Speaker 1: reassure them repeatedly that this was not a contagious thing, 449 00:24:04,200 --> 00:24:06,960 Speaker 1: because it just shows we still have a ways to go. 450 00:24:07,760 --> 00:24:11,119 Speaker 1: It is important also to emphasize that soriasis is an 451 00:24:11,160 --> 00:24:15,320 Speaker 1: autoimmune disorder, so just by nature, not contagious. It was 452 00:24:15,400 --> 00:24:17,840 Speaker 1: not though for another one hundred years or so after 453 00:24:17,920 --> 00:24:21,639 Speaker 1: von Hebra in the nineteen sixties, when a doctor named E. J. 454 00:24:21,840 --> 00:24:25,959 Speaker 1: Van Scott identified one of the ways that psoriasis actually functions, 455 00:24:26,480 --> 00:24:30,439 Speaker 1: that skin cells in people with psoriasis multiplied much faster 456 00:24:30,840 --> 00:24:34,400 Speaker 1: than in people without pariasis. This is a process called 457 00:24:34,400 --> 00:24:38,320 Speaker 1: epidermal hyperplasia, and it's caused by the immune system, as 458 00:24:38,440 --> 00:24:42,080 Speaker 1: Jen has been sharing with us, mistakingly attacking healthy skin cells, 459 00:24:42,440 --> 00:24:45,480 Speaker 1: leading to rapid skin cell turnover, and that's what actually 460 00:24:45,640 --> 00:24:49,879 Speaker 1: characterizes pariasis. Van Scott worked for the National Institutes for 461 00:24:49,920 --> 00:24:52,480 Speaker 1: Health here in the US, and his discoveries led to 462 00:24:52,520 --> 00:24:56,439 Speaker 1: an understanding that syriasis is an autoimmune condition for the 463 00:24:56,560 --> 00:25:00,040 Speaker 1: very first time, so that is last century, not that 464 00:25:00,080 --> 00:25:03,479 Speaker 1: long ago, and that revolutionized treatment, and that was huge 465 00:25:03,520 --> 00:25:07,040 Speaker 1: because it really pushed the idea that psoriasis was contagious 466 00:25:07,119 --> 00:25:10,280 Speaker 1: to bed at least for dermatologists. We know the general 467 00:25:10,359 --> 00:25:13,919 Speaker 1: public still catching up. But keep in mind we are 468 00:25:14,000 --> 00:25:18,920 Speaker 1: battling a century's long stigma here, so education remains key 469 00:25:19,119 --> 00:25:21,879 Speaker 1: for doctors as well as lay people. And the point 470 00:25:21,920 --> 00:25:24,240 Speaker 1: of all of this is that we can't come from 471 00:25:24,240 --> 00:25:26,600 Speaker 1: a place of fear if we want to understand and 472 00:25:26,680 --> 00:25:30,960 Speaker 1: treat skin conditions like pariasis. So in ancient times, it 473 00:25:31,040 --> 00:25:33,400 Speaker 1: was fear of the unknown or the different that led 474 00:25:33,440 --> 00:25:36,960 Speaker 1: to that tragic treatment of people with visible skin conditions. 475 00:25:37,080 --> 00:25:40,240 Speaker 1: And by treatment, I obviously don't just be social treatment. 476 00:25:40,560 --> 00:25:43,959 Speaker 1: Medical treatments were definitely not getting better because doctors were 477 00:25:44,000 --> 00:25:47,240 Speaker 1: assuming that a skin condition was caused by the patient 478 00:25:47,680 --> 00:25:51,760 Speaker 1: being sinful or having bad hygiene. As the distinguished American 479 00:25:51,800 --> 00:25:56,320 Speaker 1: dermatologist Paul Ebashe wrote in nineteen thirty six, quote, syriasis 480 00:25:56,520 --> 00:26:01,000 Speaker 1: is an antidote for dermatologist's ego, perhaps an antidote to 481 00:26:01,119 --> 00:26:04,359 Speaker 1: all of our egos. Just because we don't understand something 482 00:26:04,800 --> 00:26:06,879 Speaker 1: doesn't mean we have to be afraid of it, and 483 00:26:06,920 --> 00:26:11,880 Speaker 1: a lack of understanding should drive us to learn more instead. So, Jen, 484 00:26:11,920 --> 00:26:14,520 Speaker 1: what I take away from this history is that it 485 00:26:14,600 --> 00:26:17,280 Speaker 1: is all about education and that that is what is 486 00:26:17,320 --> 00:26:19,560 Speaker 1: going to kill stigma. And I know that that's a 487 00:26:19,600 --> 00:26:22,920 Speaker 1: big part of what you do with Spooney Sisters. Absolutely, 488 00:26:23,400 --> 00:26:27,200 Speaker 1: how have you seen that you know, good information improving 489 00:26:27,200 --> 00:26:29,159 Speaker 1: the lives of the members of your community. 490 00:26:29,800 --> 00:26:32,840 Speaker 2: I've definitely seen where they feel more confident in themselves 491 00:26:32,840 --> 00:26:35,920 Speaker 2: and in their treatments by the information coming out in 492 00:26:36,320 --> 00:26:39,840 Speaker 2: a manner that is not only correct but understandable. I 493 00:26:39,840 --> 00:26:41,520 Speaker 2: think a lot of times, you know, when you're seeing 494 00:26:41,520 --> 00:26:44,840 Speaker 2: a rheumatologist or even a dermatologist, it can be scary 495 00:26:44,960 --> 00:26:47,680 Speaker 2: to ask all the questions and to tell them that 496 00:26:47,720 --> 00:26:49,879 Speaker 2: you don't understand what they're talking about. And so I 497 00:26:49,920 --> 00:26:54,960 Speaker 2: think empowering people to understand and to ask for, you know, 498 00:26:55,000 --> 00:26:58,800 Speaker 2: a dumbed down version of what you're wanting to understand. Yeah, 499 00:26:59,080 --> 00:27:00,800 Speaker 2: I think that's really helped you. 500 00:27:00,920 --> 00:27:05,840 Speaker 1: Also, I think represent this really beautiful transitional arc because 501 00:27:05,880 --> 00:27:09,600 Speaker 1: you spoke to us earlier about this being painful and 502 00:27:09,680 --> 00:27:13,520 Speaker 1: embarrassing and having social stigma when you first were experiencing it. 503 00:27:13,600 --> 00:27:17,240 Speaker 1: But now you are very outspoken about your diagnosis and 504 00:27:17,280 --> 00:27:20,080 Speaker 1: you talk with other people and encourage them to share 505 00:27:20,119 --> 00:27:22,920 Speaker 1: their stories. How do you feel about that transition? 506 00:27:23,680 --> 00:27:26,240 Speaker 2: It was definitely hard. I think once I started to 507 00:27:26,280 --> 00:27:28,919 Speaker 2: notice my skin healing, and once I also started to 508 00:27:28,960 --> 00:27:31,800 Speaker 2: notice that people weren't judging me the way that I 509 00:27:31,920 --> 00:27:34,080 Speaker 2: thought they were going to judge me, I think it 510 00:27:34,080 --> 00:27:36,119 Speaker 2: made it a lot easier. You know, I definitely have 511 00:27:36,200 --> 00:27:39,560 Speaker 2: scars now. I do not like wearing shorts or skirts, dresses, 512 00:27:39,600 --> 00:27:41,840 Speaker 2: any of that. But you know what, to be honest, 513 00:27:41,960 --> 00:27:45,040 Speaker 2: no one's ever asked me about my legs. They don't 514 00:27:45,080 --> 00:27:48,159 Speaker 2: pay that much attention. It's what it boils down to, 515 00:27:48,400 --> 00:27:50,840 Speaker 2: is more in our heads than it is everybody else's. 516 00:27:51,000 --> 00:27:52,520 Speaker 2: They're consumed by themselves. 517 00:27:53,359 --> 00:27:56,920 Speaker 1: They're worrying about their own scars, other issues that they're 518 00:27:56,920 --> 00:28:01,200 Speaker 1: self conscious about. You have met your family and your 519 00:28:01,200 --> 00:28:04,199 Speaker 1: friends and their support so much that I wonder what 520 00:28:04,280 --> 00:28:07,280 Speaker 1: kind of advice you might have for people that maybe 521 00:28:07,359 --> 00:28:09,960 Speaker 1: don't have a skin condition themselves, but live with or 522 00:28:10,000 --> 00:28:12,239 Speaker 1: love someone with a skin condition. What's the best thing 523 00:28:12,280 --> 00:28:13,359 Speaker 1: they can do to help? 524 00:28:14,080 --> 00:28:18,000 Speaker 2: Ask them what they need, do your own research, find 525 00:28:18,040 --> 00:28:20,720 Speaker 2: what you can to help them feel better. I think 526 00:28:20,920 --> 00:28:23,560 Speaker 2: that's one thing I super appreciate about my own husband 527 00:28:24,160 --> 00:28:26,680 Speaker 2: is he will go out on a rough date where 528 00:28:26,760 --> 00:28:30,240 Speaker 2: I'm having a flare or a skin breakout, and he 529 00:28:30,280 --> 00:28:32,960 Speaker 2: will find me anything he can to try to help, 530 00:28:33,000 --> 00:28:35,439 Speaker 2: if it's an EPs and salt, a save, whatever it is, 531 00:28:35,480 --> 00:28:38,200 Speaker 2: He'll come home with a whole box of stuff. And 532 00:28:38,280 --> 00:28:40,880 Speaker 2: so that's what I would recommend to people, is find 533 00:28:40,920 --> 00:28:43,280 Speaker 2: the things or talk to somebody that knows the things 534 00:28:43,320 --> 00:28:46,160 Speaker 2: to recommend. I even have an Amazon list that I 535 00:28:46,240 --> 00:28:48,440 Speaker 2: share with people, and I've named it Spoonies, And the 536 00:28:48,600 --> 00:28:52,520 Speaker 2: entire thing is revolving around what I can recommend to 537 00:28:52,560 --> 00:28:54,880 Speaker 2: people that I've tried that I love. And so if 538 00:28:54,920 --> 00:28:56,880 Speaker 2: you have something like that, or you know somebody that 539 00:28:56,920 --> 00:29:01,240 Speaker 2: does ask for it because that's how you can help them. 540 00:29:01,520 --> 00:29:03,360 Speaker 1: That's nice because you kind of get a double dose. 541 00:29:03,440 --> 00:29:06,360 Speaker 1: They get the actual things that will help them, and 542 00:29:06,560 --> 00:29:08,720 Speaker 1: just like the benefit of knowing that they're loved and 543 00:29:08,760 --> 00:29:12,800 Speaker 1: cared about exactly. Your story is so powerful because you 544 00:29:12,840 --> 00:29:15,680 Speaker 1: did turn this into something that not only has been 545 00:29:15,720 --> 00:29:18,240 Speaker 1: a way you cope with it, but that impacts and 546 00:29:18,360 --> 00:29:21,520 Speaker 1: empowers a lot of other people to cope with similar issues. 547 00:29:22,000 --> 00:29:25,200 Speaker 1: If you could send one message to anybody listening who 548 00:29:25,280 --> 00:29:28,120 Speaker 1: might be grappling with their own diagnosis, what would it be. 549 00:29:28,920 --> 00:29:32,000 Speaker 2: It's okay to grieve. It's okay to grieve the life 550 00:29:32,000 --> 00:29:34,920 Speaker 2: and the body that you once have. But put a 551 00:29:34,960 --> 00:29:38,320 Speaker 2: time limit on it, because, like I've said before, this 552 00:29:38,440 --> 00:29:41,760 Speaker 2: is one life that you have and there's so much 553 00:29:41,800 --> 00:29:43,760 Speaker 2: out there and so much that you have to offer. 554 00:29:44,120 --> 00:29:46,640 Speaker 2: So put a time limit on that grief. And if 555 00:29:46,640 --> 00:29:48,760 Speaker 2: it needs to come out once in a while, that's okay, 556 00:29:48,840 --> 00:29:51,440 Speaker 2: but always pull out that timer because you need to 557 00:29:51,440 --> 00:29:52,440 Speaker 2: get out there and live. 558 00:29:53,360 --> 00:29:55,880 Speaker 1: I love it, Jen, Thank you so so much for 559 00:29:55,920 --> 00:29:56,760 Speaker 1: being with me today. 560 00:29:57,120 --> 00:29:58,320 Speaker 2: Thank you so much for having me. 561 00:30:02,480 --> 00:30:06,200 Speaker 1: Our skin is hosted by myself Holly Frye and executive 562 00:30:06,240 --> 00:30:09,880 Speaker 1: produced and engineered by Ryan Martz. Our senior producer and 563 00:30:09,920 --> 00:30:13,440 Speaker 1: writer is Meredith Barnes. If you enjoy the show, share 564 00:30:13,480 --> 00:30:16,280 Speaker 1: it with your friends. You can also listen and follow 565 00:30:16,520 --> 00:30:20,240 Speaker 1: on the iHeartRadio app, Apple Podcasts, or wherever you get 566 00:30:20,240 --> 00:30:21,160 Speaker 1: your podcasts.