WEBVTT - Drive, Defy, and Define: Ivy Smith on Psoriasis, Stunt Work, and Self-Acceptance 0:00:03.560 --> 0:00:09.280 Rube. 0:00:09.440 --> 0:00:12.639 I'm Holly Fry and this is Season two of Our Skin, 0:00:12.840 --> 0:00:17.680 a personal discovery podcast. Today we are so excited to 0:00:17.720 --> 0:00:21.799 welcome Ivy Smith to Our Skin. Ivy is a model, 0:00:21.920 --> 0:00:25.959 an actress, a stunt driver, and a passionate advocate for 0:00:26.040 --> 0:00:31.040 soriasis awareness whose journey is as multifaceted as it is powerful. 0:00:31.680 --> 0:00:34.840 And like other guests we've had, Ivy first noticed signs 0:00:34.840 --> 0:00:38.479 of soriasis shortly after having a child, in this case, 0:00:38.600 --> 0:00:41.600 after the birth of her second child, and at the 0:00:41.640 --> 0:00:44.279 time she wasn't sure what was happening, just that her 0:00:44.280 --> 0:00:48.519 body was reacting in a way that felt unfamiliar and overwhelming. 0:00:49.320 --> 0:00:53.120 During her third pregnancy, she experienced another major flare, but 0:00:53.360 --> 0:00:56.760 like many people, Ivy didn't seek treatment right away. It 0:00:56.760 --> 0:01:00.560 actually took time to seek out a diagnosis. Since then, 0:01:00.680 --> 0:01:03.600 she has used her platform to speak honestly about the 0:01:03.600 --> 0:01:08.240 emotional and physical realities of life with psoriasis. Her openness 0:01:08.280 --> 0:01:11.399 has helped others feel less alone, and it pushes the 0:01:11.560 --> 0:01:15.560 entertainment industry toward a more inclusive vision of beauty and health. 0:01:16.000 --> 0:01:19.720 So today we are talking to Ivy about visibility, vulnerability, 0:01:19.959 --> 0:01:23.040 and the wild ride that brought her here, Ivy, Welcome 0:01:23.080 --> 0:01:25.120 to our skin. We are so glad you're here. 0:01:25.640 --> 0:01:26.679 Thank you for having me. 0:01:27.319 --> 0:01:30.560 Take us back to when you first noticed changes in 0:01:30.600 --> 0:01:34.039 your skin and thought like, this might be psoriasis. That 0:01:34.280 --> 0:01:36.760 was right after you had your second child, right. 0:01:37.120 --> 0:01:42.720 Correct, Yes, so I actually didn't know x risies existed. 0:01:43.520 --> 0:01:47.199 I just saw like a lot of flakes coming out 0:01:47.520 --> 0:01:50.440 from my hair and it was itchy and painful, and 0:01:50.480 --> 0:01:53.400 I was like, what's going on, Well, maybe my hormones 0:01:53.440 --> 0:01:56.280 were changing because I had another kid. Yeah, I don't 0:01:56.320 --> 0:01:58.640 know what's going on. And I was very stressed out 0:01:58.640 --> 0:02:05.640 at the time, trying to balance another baby and work, money, 0:02:06.280 --> 0:02:10.720 life in general. And I kind of waited for a 0:02:10.720 --> 0:02:13.280 bit and it got worse and worse and worse, and 0:02:13.320 --> 0:02:15.799 it was very painful, and I was like, I need 0:02:15.800 --> 0:02:18.640 to do something about this. So I finally went to 0:02:18.639 --> 0:02:21.920 the doctor like a year later. And I know I 0:02:21.919 --> 0:02:25.640 shouldn't have done that, you know, I should have went sooner. 0:02:25.800 --> 0:02:29.440 Maybe I could have helped my crisis journey a little 0:02:29.480 --> 0:02:32.639 bit better. And that's when my doctor told me it 0:02:32.680 --> 0:02:35.680 was crisis. I didn't know what it was, and they 0:02:35.720 --> 0:02:37.560 gave me some pamphlets to read about it. 0:02:38.000 --> 0:02:39.880 I hope you will give yourself a little bit of 0:02:39.880 --> 0:02:43.600 grace though, because when you have a newborn, it's not 0:02:43.680 --> 0:02:46.000 like you're like and let me add another doctor's appointment 0:02:46.000 --> 0:02:50.120 to the mix. So I'm not gonna guilt you at 0:02:50.120 --> 0:02:52.119 all for waiting a while to get it checked out. 0:02:52.639 --> 0:02:56.560 You then had another flair during your third pregnancy. Did 0:02:56.639 --> 0:03:01.360 you talk to your doctors about that pattern? Pregnancy seem 0:03:01.440 --> 0:03:02.639 to be such a trigger for you. 0:03:03.480 --> 0:03:06.600 I didn't even think about it at the time. I 0:03:06.760 --> 0:03:09.760 just thought, you know, oh, it just came back, another flare. 0:03:10.200 --> 0:03:11.960 You know, why am I so stressed? 0:03:12.520 --> 0:03:15.120 Why am I so stressed with? Yeah, exactly three kids 0:03:15.160 --> 0:03:17.720 and a job. But why I don't understand. 0:03:18.240 --> 0:03:18.760 Yeah, you know. 0:03:20.160 --> 0:03:22.600 It is interesting because so many of the people we've 0:03:22.600 --> 0:03:25.280 talked to on the show, pregnancy is when it first 0:03:25.360 --> 0:03:28.760 shows up for them, So there is clearly a link there. 0:03:29.160 --> 0:03:32.920 I'm curious, though, now you are past that third pregnancy, 0:03:33.000 --> 0:03:36.560 how does your psoriasis show up now? Have the patterns 0:03:36.560 --> 0:03:40.320 of what triggers flares changed over time? Have you identified 0:03:40.320 --> 0:03:41.520 different patterns? 0:03:41.960 --> 0:03:45.720 So it is actually it was usually on the back 0:03:45.760 --> 0:03:49.000 of my scalp, in my ears, around my ears, and 0:03:49.040 --> 0:03:52.280 then it's going on my other parts of my body, 0:03:52.360 --> 0:03:57.240 like my arm, my hand, my face, my neck, my legs. 0:03:57.400 --> 0:04:01.360 So it's it's spreading. I guess you could say, I 0:04:01.400 --> 0:04:04.240 don't know the term or if it is spreading or 0:04:04.240 --> 0:04:07.760 it's just my immune system going off and saying, hey, 0:04:07.960 --> 0:04:09.760 you're stressed out, chill out. 0:04:11.440 --> 0:04:14.600 You are an actress and a model, among other things, 0:04:14.680 --> 0:04:17.880 so of course in those industries your appearance is something 0:04:18.279 --> 0:04:20.159 that you have to confront for work a lot of 0:04:20.160 --> 0:04:23.919 the time. How did people react on sets if you 0:04:23.960 --> 0:04:26.280 were there and having a flare and was there an 0:04:26.360 --> 0:04:30.080 understanding early on of whatsiriasis was and what you were 0:04:30.080 --> 0:04:31.000 actually going through? 0:04:31.520 --> 0:04:32.520 So good question. 0:04:32.720 --> 0:04:36.279 In the beginning, I'm still alone embarrassed, but I'm trying 0:04:36.320 --> 0:04:39.480 to like get over that. But in the beginning, I 0:04:39.680 --> 0:04:44.360 had to tell the makeup artist the hair person that hey, 0:04:44.839 --> 0:04:50.080 I have soriasis and it's not contagious. Actually, back then 0:04:50.200 --> 0:04:52.840 they didn't know a lot about psiasis, so I had 0:04:52.880 --> 0:04:56.000 to kind of educate them and tell them what it is. 0:04:56.200 --> 0:04:59.200 And in a way in the beginning. 0:04:59.480 --> 0:05:03.200 Some were little standoffish and like okay, you know, I 0:05:03.240 --> 0:05:06.640 could see it in their face, like, yeah, they're using 0:05:06.760 --> 0:05:09.400 makeup brushes on me and like on parts of my 0:05:09.600 --> 0:05:13.400 skin or to cover it up. And I felt that 0:05:13.800 --> 0:05:17.919 it was a little uneas then. But now when I 0:05:18.040 --> 0:05:20.480 go to shoots, they know what it is and most 0:05:20.480 --> 0:05:23.440 of them have it as well, so they're like, Okay, 0:05:23.480 --> 0:05:24.080 we got this. 0:05:24.839 --> 0:05:28.520 That's cool. You just mentioned and you've spoken in other 0:05:28.560 --> 0:05:32.320 places really candidly about the self consciousness that you have 0:05:32.360 --> 0:05:35.800 felt during flares. Was there a particular moment when you 0:05:35.839 --> 0:05:39.200 started to challenge that instinct within yourself and share your 0:05:39.200 --> 0:05:42.000 skin more openly or was it a bit of a 0:05:42.040 --> 0:05:43.400 slower shift. 0:05:43.880 --> 0:05:47.880 Back then, it was a slower shift because I was 0:05:48.040 --> 0:05:50.200 telling people about it and they didn't know what it was. 0:05:50.600 --> 0:05:53.159 Not that many people knew about it, and I felt 0:05:53.320 --> 0:05:56.720 kind of alone, like am I an outcast? What's going on? 0:05:56.800 --> 0:05:59.120 What's going on with my body? Am I like an alien? 0:05:59.440 --> 0:06:01.560 People look at at me like, oh, what is that? 0:06:01.640 --> 0:06:04.800 Get away from me? They didn't say that per se, 0:06:04.839 --> 0:06:08.479 but I felt that right. I felt very insecure in 0:06:08.560 --> 0:06:09.719 my body back then. 0:06:10.600 --> 0:06:14.240 I'm curious do you think maybe subconsciously, as you were 0:06:14.279 --> 0:06:17.200 explaining it to other people and kind of self advocating, 0:06:17.720 --> 0:06:20.880 do you think you heard yourself and that helped ease 0:06:20.880 --> 0:06:24.240 that transition. When you're saying these things and you're explaining 0:06:24.279 --> 0:06:27.520 them over and over, are you also receiving that message 0:06:27.680 --> 0:06:30.680 and maybe getting a little more comfortable with the idea. 0:06:30.880 --> 0:06:35.320 I think when more people came out, I didn't feel alone, 0:06:35.480 --> 0:06:37.680 and it made me feel a lot more comfortable and 0:06:37.760 --> 0:06:40.359 welcoming to show it. 0:06:40.480 --> 0:06:43.520 Who cares? I have sur rises? Yeah, what do you have? 0:06:43.720 --> 0:06:43.919 You know? 0:06:45.360 --> 0:06:46.520 But noah. 0:06:46.560 --> 0:06:51.800 I felt much more comfortable as people started saying I 0:06:51.880 --> 0:06:55.440 have it too, or my brother has or my sister 0:06:55.480 --> 0:06:58.240 has it, or my mom has it, And it felt 0:06:58.320 --> 0:07:04.440 more comfortable and I started saying to myself like, hey, 0:07:05.360 --> 0:07:08.640 this is normal now, let me just embrace it. And 0:07:08.680 --> 0:07:12.440 then my insecurity started to fade away. I felt good 0:07:12.680 --> 0:07:13.480 about myself. 0:07:14.080 --> 0:07:16.800 I understand you are also a stunt driver. I have 0:07:16.880 --> 0:07:20.360 so many questions how did you gain this particular skill? 0:07:20.960 --> 0:07:24.480 And also, aren't you supposed to be avoiding stress theoretically 0:07:24.920 --> 0:07:27.520 or is it for you something that's actually a stress release. 0:07:27.560 --> 0:07:29.160 I could see that being the case as well. 0:07:29.680 --> 0:07:33.480 It's like a mental game when I'm doing stunts or 0:07:34.120 --> 0:07:36.440 I'm on a show and they need me to do 0:07:36.600 --> 0:07:39.640 certain things, it's like playing chess, Like okay, how am 0:07:39.680 --> 0:07:41.000 I going to do this? If I do this, they 0:07:41.040 --> 0:07:43.200 will do that. Or if I do this, I could 0:07:43.280 --> 0:07:46.960 do that. So it's kind of mentally, I guess, challenging 0:07:46.960 --> 0:07:49.880 me in a way, and then I can overcome it 0:07:49.920 --> 0:07:52.640 and it feels good. It's like satisfying to be like, Okay, 0:07:52.640 --> 0:07:55.679 I did it feels good and then the thrill of 0:07:56.120 --> 0:07:58.239 the I guess you know, it's like when you're riding 0:07:58.440 --> 0:08:02.080 on a roller coaster. H you'reic heart dropped and it's 0:08:02.160 --> 0:08:06.080 like the blood is pumping. It feels like exhilarating to me. 0:08:06.640 --> 0:08:09.560 So when I race and I do that and do 0:08:09.680 --> 0:08:12.640 stunts and stuff like that, I love it. 0:08:12.920 --> 0:08:15.560 You get the adrenaline rush of the danger and then 0:08:15.640 --> 0:08:18.960 the dopamine hit of having solved the problem. Yes, I 0:08:18.960 --> 0:08:23.200 can see where that's powerful. Chronic conditions like siriasis can 0:08:23.280 --> 0:08:26.200 really shake a person's sense of control. And I'm wondering 0:08:26.280 --> 0:08:28.560 how you, and this may tie to the answer you 0:08:28.600 --> 0:08:32.040 just gave me, how you manage those moments when siasis 0:08:32.080 --> 0:08:36.040 still flares, even after all of your inner work and advocacy. 0:08:36.080 --> 0:08:37.600 Do you look at that as a puzzle that you 0:08:37.640 --> 0:08:38.560 have to solve now? To you? 0:08:39.240 --> 0:08:43.280 Okay, so of course, I understand that stress kind of 0:08:43.280 --> 0:08:47.120 flares it out. It's hard to manage stress, but I 0:08:47.160 --> 0:08:51.280 know I have to, and that's another challenge I'm trying 0:08:51.320 --> 0:08:56.520 to deal with and overcome. But I'm trying to learn 0:08:56.559 --> 0:08:59.520 ways to kind of alleviate that, like working out. I 0:08:59.600 --> 0:09:03.520 just went to gym this morning and just doing breathing 0:09:03.559 --> 0:09:08.360 exercises to kind of help and understand that I can't 0:09:08.400 --> 0:09:11.559 control everything and learn how to let it go. 0:09:12.559 --> 0:09:15.240 One thing that you mentioned earlier and that you've expressed 0:09:15.240 --> 0:09:17.559 in other interviews is that you do wish you had 0:09:17.600 --> 0:09:20.600 sought medical treatment sooner. And we talked a little bit 0:09:20.640 --> 0:09:22.720 about some of the reasons that might have been the case. 0:09:22.800 --> 0:09:25.200 But what was the moment that got you to say, 0:09:25.840 --> 0:09:27.960 all right, let's go to the doctor. I need an appointment. 0:09:28.920 --> 0:09:31.520 Well, I knew that whatever was happening to me was 0:09:31.559 --> 0:09:35.600 not norramal at all. And it was embarrassing to even 0:09:35.640 --> 0:09:39.280 wear a dark colored shirt because all the flakes will 0:09:39.320 --> 0:09:41.560 come out and it just shows up in my hair 0:09:41.600 --> 0:09:45.080 because I have black hair, so it's definitely going to shine. 0:09:45.080 --> 0:09:47.520 And I can't put my hair in a ponytail like 0:09:47.559 --> 0:09:50.920 I used to because they'll see it. It was getting 0:09:50.960 --> 0:09:54.840 to a point where I couldn't live in a comfortable 0:09:55.280 --> 0:09:58.800 stage at life, and I was trying to hide it 0:09:58.880 --> 0:10:01.040 and it was getting warm, and then I have to 0:10:01.200 --> 0:10:03.600 figure out a new way to hide it, and I'm 0:10:03.640 --> 0:10:05.920 just like, I need to get this checked. Not only 0:10:06.280 --> 0:10:09.280 hiding it was an issue is the pain and it 0:10:09.400 --> 0:10:11.280 was very annoying. 0:10:11.840 --> 0:10:15.360 It's one of those things that causes like a stress spiral. Right. 0:10:15.559 --> 0:10:18.320 The stress contributes to it, but then you get stressed 0:10:18.320 --> 0:10:20.720 because you're trying to conceal it, and then it gets 0:10:20.760 --> 0:10:24.160 worse and it just keeps going out of control. It is, 0:10:24.240 --> 0:10:26.240 as we know from talking to a lot of people, 0:10:26.760 --> 0:10:30.319 not easy to navigatesoriasis solow and it is also not 0:10:30.440 --> 0:10:33.800 easy to reach out and ask for help. Today, as 0:10:33.880 --> 0:10:36.160 we step into skin history, we're going to tell the 0:10:36.240 --> 0:10:40.400 story of how one classified ad a birthday gift turned 0:10:40.440 --> 0:10:45.240 into the largest national patient advocacy group for people with psoriasis, 0:10:45.400 --> 0:10:48.560 that is the National Psoriasis Foundation. We're going to talk 0:10:48.600 --> 0:10:50.319 about that, and I'm going to bring Ivy along for 0:10:50.400 --> 0:11:06.800 the ride right after this. For today's trip through skin history, 0:11:06.880 --> 0:11:09.880 we are not headed to ancient Egypt or nineteenth century 0:11:09.960 --> 0:11:13.120 France this time. Don't worry. We're not talking about gross treatments. 0:11:13.520 --> 0:11:15.959 We are traveling to a much more recent time. We 0:11:16.080 --> 0:11:19.599 are headed to nineteen sixty six, to Portland, Oregon. So 0:11:19.920 --> 0:11:23.600 picture it a black and white classified ad section tucked 0:11:23.640 --> 0:11:26.760 in the back pages of the Oregonian newspaper, and in 0:11:26.880 --> 0:11:30.480 between listings for used cars and help wanted ads, one 0:11:30.600 --> 0:11:34.199 small notice catches the eye. It's from someone looking to 0:11:34.280 --> 0:11:38.880 connect with others who have psyriasis. Just a few words, 0:11:39.000 --> 0:11:42.719 but this ad changed everything because the person it was 0:11:42.800 --> 0:11:47.480 placed for, Beverly Foster, was desperate and her husband Larry, 0:11:47.600 --> 0:11:50.559 placed this ad for her as a birthday gift. She 0:11:50.760 --> 0:11:54.960 had very severe psoriasis covering nearly eighty percent of her body, 0:11:55.400 --> 0:11:58.600 and the itching was relentless, and the pain was constant, 0:11:59.000 --> 0:12:04.560 and the emotional understandably almost unbearable. Beverly was really lonely, 0:12:04.720 --> 0:12:07.200 and she wanted to know if anyone else had any 0:12:07.320 --> 0:12:10.800 experience like hers. IVY. How sweet is it that her 0:12:10.880 --> 0:12:14.400 husband tried to figure out a way to find her 0:12:14.480 --> 0:12:15.960 friends by putting out this ad. 0:12:16.679 --> 0:12:18.959 That is very sweet. I wish I had that support 0:12:19.040 --> 0:12:22.160 when I had my first flare, And. 0:12:22.240 --> 0:12:25.160 Of course back then there was no internet right there 0:12:25.360 --> 0:12:29.760 weren't patient communities. There was no national psoriasis Foundation. There 0:12:29.800 --> 0:12:32.000 were just a few pamphlets that you could get from 0:12:32.040 --> 0:12:35.480 your doctor's office, and otherwise it was pretty much silence. 0:12:36.240 --> 0:12:40.200 In the nineteen sixties, treatment options for ciriasis were really 0:12:40.280 --> 0:12:45.320 really limited. Often ineffective coal tar preparations, which were messy 0:12:45.400 --> 0:12:49.199 and smelly, were among the few available treatments. Some doctors 0:12:49.240 --> 0:12:52.480 would prescribe cordico steroids, but of course those come with 0:12:52.559 --> 0:12:56.560 significant side effects, especially when used long term, and many 0:12:56.640 --> 0:12:58.439 patients were kind of just told to live with it, 0:12:58.760 --> 0:13:01.200 or they were prescribed treatment that barely made a dent 0:13:01.360 --> 0:13:05.000 in their symptoms. So for someone like Beverly who psoriasis 0:13:05.160 --> 0:13:10.320 was so extensive, finding relief felt nearly impossible. And at 0:13:10.360 --> 0:13:13.800 this point, the medical community did not fully understand poriasis 0:13:13.960 --> 0:13:18.439 as an autoimmune condition. That knowledge was just starting to 0:13:18.520 --> 0:13:21.160 come into focus in the nineteen sixties, and a lot 0:13:21.200 --> 0:13:23.719 of doctors treated it just as a skin disorder, not 0:13:24.000 --> 0:13:29.520 recognizing the complex autoimmunity that actually causes the disease. So 0:13:29.800 --> 0:13:33.080 there was a general sense that, like dandriff or dry skin, 0:13:33.240 --> 0:13:36.760 psoriasis wasn't a big deal, and that meant that treatments 0:13:36.840 --> 0:13:40.640 were often superficial At best. They addressed symptoms rather than 0:13:40.679 --> 0:13:45.600 the underlying causes. Soriasis in the nineteen sixties wasn't just misunderstood, 0:13:45.640 --> 0:13:50.400 it was largely invisible because all of this misunderstanding came 0:13:50.480 --> 0:13:54.000 with fears of stigma. Ivy. You have talked about even 0:13:54.080 --> 0:13:57.160 in this time of advocacy and having more information, there 0:13:57.240 --> 0:13:58.960 is still lots of stigma, right. 0:13:59.440 --> 0:13:59.920 I would think. 0:14:00.120 --> 0:14:05.319 So now that we have more knowledge of everything or 0:14:05.559 --> 0:14:09.960 about psoriasis, I feel that helps. It takes one step 0:14:10.400 --> 0:14:13.080 and it just snowballs into something bigger and better. 0:14:13.160 --> 0:14:14.880 I know. I think it's a perfect thing to say 0:14:14.920 --> 0:14:17.720 because it ties in very much a Beverly's story because 0:14:17.720 --> 0:14:20.080 the general public at this point knew almost nothing about 0:14:20.200 --> 0:14:22.600 the condition. It's kind of like how you mentioned earlier, 0:14:22.720 --> 0:14:25.400 like when you first started explaining to makeup artists what 0:14:25.600 --> 0:14:28.560 was going on. They didn't know, and the little that 0:14:28.640 --> 0:14:31.720 the public did know at this point was often completely wrong. 0:14:32.240 --> 0:14:36.000 A lot of people still thoughtsoriasis was contagious, or that 0:14:36.160 --> 0:14:38.480 it was dirty and had to do with hygiene, or 0:14:38.520 --> 0:14:41.880 that it was somehow shameful, and this stigma led a 0:14:41.920 --> 0:14:45.080 lot of people to hide their symptoms and their stories, 0:14:45.800 --> 0:14:50.160 and dermatologists even were pretty ill equipped, and general practitioners 0:14:50.400 --> 0:14:53.800 were even less prepared. There were no standard treatments that 0:14:53.880 --> 0:14:57.600 worked well for everyone. Research funding was minimal, and people 0:14:57.640 --> 0:15:02.000 with psoriasis felt isolated and ashamed and alone, something that 0:15:02.080 --> 0:15:04.240 a lot of people today still feel before they find 0:15:04.320 --> 0:15:07.720 all of these communities. So when Larry Foster placed that 0:15:07.800 --> 0:15:10.840 classified ad for his wife, he was really doing a 0:15:10.960 --> 0:15:15.400 quietly radical thing. He was asking people with psoriasis to 0:15:15.560 --> 0:15:18.560 raise their hands and say I'm here and kind of 0:15:18.680 --> 0:15:21.280 come out in that regard. And the cool thing is 0:15:21.680 --> 0:15:25.320 people responded. It is reported that the first day that 0:15:25.400 --> 0:15:30.000 that ad appeared, hundreds of people contacted Beverly. People from 0:15:30.040 --> 0:15:33.400 across Oregon and even farther wrote or called to say 0:15:33.840 --> 0:15:37.120 I have this too. I have psoriasis, or my spouse does, 0:15:37.400 --> 0:15:39.560 or my child has it, and we don't know where 0:15:39.600 --> 0:15:42.600 to turn either. Can you relate to that feeling? Do 0:15:42.720 --> 0:15:44.640 you think you would have responded to an AD like 0:15:44.760 --> 0:15:48.560 this if you had discovered your psoriasis in a time 0:15:48.640 --> 0:15:52.240 when there wasn't a lot of online information and doctors 0:15:52.280 --> 0:15:53.440 were not as informed. 0:15:54.320 --> 0:15:57.080 Oh yeah, Like I told you earlier that I felt 0:15:57.200 --> 0:16:00.920 isolated and like an alien. I didn't know anybody that 0:16:01.080 --> 0:16:03.840 hadn't then slowly started coming out. So definitely, if I 0:16:03.920 --> 0:16:06.200 saw that ad, I would be thrilled in. I would 0:16:06.240 --> 0:16:08.920 definitely reach out and be a part of a trend group, 0:16:09.080 --> 0:16:11.000 you know, the Sizes team, right. 0:16:11.840 --> 0:16:13.880 I have to imagine that had to feel like this 0:16:14.120 --> 0:16:18.560 little flag of hope too, just to recognize someone else 0:16:18.680 --> 0:16:22.080 has stated publicly like, hey I have this, I'm looking 0:16:22.160 --> 0:16:24.800 for other people like me. If you're the other person 0:16:24.960 --> 0:16:27.240 like them, and you've never had anybody else say that, 0:16:27.680 --> 0:16:29.760 that's got to be like, that's the thrill in the 0:16:29.840 --> 0:16:34.400 rush right there. So people poured out their frustrations and 0:16:34.440 --> 0:16:37.480 their fears when contacting Beverly. Some of them had never 0:16:37.560 --> 0:16:41.680 spoken to anyone else about their psiriasis before. Others had 0:16:41.720 --> 0:16:45.360 been through years of ineffective treatment and feeling isolated, and 0:16:45.520 --> 0:16:49.280 a lot, just like Beverly, were overwhelmed by the emotional 0:16:49.440 --> 0:16:53.680 toll and the volume of correspondents that she received really 0:16:53.760 --> 0:16:57.760 surprised Beverly. But even more striking was the depth of 0:16:57.880 --> 0:17:01.120 pain and loneliness in those letters and those calls. It 0:17:01.280 --> 0:17:04.600 was so abundantly clear she was not alone. There was 0:17:04.680 --> 0:17:07.840 this whole community, and it was one that hadn't even 0:17:07.960 --> 0:17:11.879 known that it existed. So she started gathering those letters, 0:17:12.000 --> 0:17:15.800 she started calling back, and then she did something that 0:17:15.840 --> 0:17:19.600 would shape the next sixty years of patient advocacy. She 0:17:19.760 --> 0:17:23.000 decided to organize I love this. She started a local 0:17:23.040 --> 0:17:26.040 support group for people that were living with psoriasis. And 0:17:26.160 --> 0:17:29.560 this started out very, very small, a few dozen people 0:17:29.760 --> 0:17:33.560 gathering in church basements in Portland or community centers so 0:17:33.640 --> 0:17:36.480 that they could share their stories and ask questions and 0:17:36.600 --> 0:17:40.120 just support one another. But it did not stay small 0:17:40.200 --> 0:17:43.680 for very long. Word spread, more letters kept coming in, 0:17:44.200 --> 0:17:47.560 and soon this little support group was getting inquiries from 0:17:47.640 --> 0:17:51.000 across the country. And so what started as this simple 0:17:51.119 --> 0:17:54.920 casual gathering grew very quickly beyond something that a single 0:17:55.000 --> 0:17:58.679 person could manage, and Beverly realized people didn't just need 0:17:58.800 --> 0:18:02.560 local support, they need did a national voice. So she 0:18:02.760 --> 0:18:05.800 started the work of transforming this Oregon based support group 0:18:06.280 --> 0:18:09.640 into something much bigger. This seems to me so daunting, 0:18:09.840 --> 0:18:12.440 but I have to feel like it must have been 0:18:12.600 --> 0:18:16.720 such an empowering moment to realize that you inadvertently became 0:18:16.760 --> 0:18:20.399 a change maker, to want to transition into this that 0:18:20.600 --> 0:18:24.680 transition going National was not easy. Beverly had a lot 0:18:24.800 --> 0:18:27.000 to do. She had to learn about nonprofit law, she 0:18:27.080 --> 0:18:31.960 had to learn about fundraising and organizational management. All throughout 0:18:32.000 --> 0:18:35.320 this she was also managing her own very severe psoriasis. 0:18:35.480 --> 0:18:38.480 But she was very determined to ensure that no one 0:18:38.520 --> 0:18:41.080 else would have to feel alone as she had felt. 0:18:42.080 --> 0:18:45.080 I would imagine there would be a sense of identifying 0:18:45.160 --> 0:18:46.200 with this idea for you. 0:18:47.200 --> 0:18:50.159 Yes, it makes me want to like, is she alive? 0:18:50.280 --> 0:18:52.000 Can I contact her now and say thank you? 0:18:53.160 --> 0:18:57.200 Beverly? Beverly then, just a year after she started, so 0:18:57.280 --> 0:19:00.920 we're at nineteen sixty seven now, Beverly's local support group 0:19:01.040 --> 0:19:05.920 officially became the National Soriasis Foundation, and Beverly served as 0:19:05.960 --> 0:19:09.680 the organization's driving force. In those early years. She worked 0:19:09.880 --> 0:19:14.320 absolutely tirelessly to build the infrastructure that would support Sorias's 0:19:14.440 --> 0:19:18.760 patients nationwide, and the foundation started small. It was Beverly 0:19:19.000 --> 0:19:21.359 and a handful of volunteers that were working out of 0:19:21.400 --> 0:19:25.159 their homes, but it grew very rapidly. She understood that 0:19:25.280 --> 0:19:29.080 creating lasting change required a lot more than just good intentions. 0:19:29.280 --> 0:19:34.280 It required strategic thinking and medical expertise, and sustained advocacy 0:19:35.359 --> 0:19:38.800 Beverly was the executive director of the National Soriasis Foundation 0:19:39.000 --> 0:19:42.960 throughout its first crucial decade. She created public awareness of 0:19:43.000 --> 0:19:46.520 the fact that siriasis is not contagious and also can 0:19:46.560 --> 0:19:49.760 be debilitating and severe in an era during which ad 0:19:49.920 --> 0:19:54.240 campaigns put this disease in the same category as dandriff. 0:19:55.200 --> 0:19:58.760 She lobbied, she actually testified before Congress to establish funding 0:19:59.080 --> 0:20:02.159 for medical research and public education, and she was a 0:20:02.280 --> 0:20:06.240 patient advocate within the medical community. Have you had any 0:20:06.280 --> 0:20:09.639 contact with the National Psoriasis Foundation or other patient groups. 0:20:10.200 --> 0:20:13.080 I have not, but I am in a group on Facebook. 0:20:13.800 --> 0:20:17.040 I also tried to see if I could educate other 0:20:17.160 --> 0:20:20.240 people with it, but I would definitely be interested in 0:20:20.560 --> 0:20:22.160 another group seeing how I can help. 0:20:22.720 --> 0:20:24.440 Do you feel like you have a good sense of 0:20:24.520 --> 0:20:26.959 support at this point in your journey with psoriasis? 0:20:27.760 --> 0:20:27.879 Oh? 0:20:28.000 --> 0:20:30.440 Yeah, definitely. I found out my dad had it. 0:20:31.160 --> 0:20:32.360 He didn't, Oh my goodness. 0:20:32.880 --> 0:20:35.040 Yeah, and so he is a good support. 0:20:35.400 --> 0:20:37.440 Did that change your relationship with your dad? 0:20:38.000 --> 0:20:40.399 We always had a good relationship, but it also definitely 0:20:40.480 --> 0:20:43.560 made us closer, like, Oh, let's see what's stuff we 0:20:43.640 --> 0:20:44.399 could show each other. 0:20:44.440 --> 0:20:48.879 Hey, this is my that is amazing. So there's a 0:20:48.920 --> 0:20:52.719 little blip in Beverly's story. We don't know exactly what happened, 0:20:52.760 --> 0:20:55.440 but Beverly and Larry's marriage did end at some point 0:20:56.000 --> 0:20:58.640 during this whole journey. But she did meet the man 0:20:58.960 --> 0:21:00.560 that she would spend the rest of her life with 0:21:00.800 --> 0:21:04.600 at the twentieth anniversary party for the National Soriasis Foundation. 0:21:05.000 --> 0:21:08.080 That was doctor Kenneth Halprin. They got married in nineteen 0:21:08.119 --> 0:21:12.920 eighty nine and together they continued fundraising and advocating for patients, 0:21:13.040 --> 0:21:17.920 including being advocates for the AIDS community in the nineteen nineties. 0:21:18.000 --> 0:21:20.280 So they were way ahead of the curve in terms 0:21:20.320 --> 0:21:23.639 of really taking care of people in very organized ways. 0:21:24.240 --> 0:21:27.320 But I want to talk more about this little organization 0:21:27.440 --> 0:21:31.879 that could, the National Soriasis Foundation. By the early nineteen seventies, 0:21:32.080 --> 0:21:37.600 the National Soriasis Foundation had launched patient education efforts, newsletters, 0:21:37.720 --> 0:21:42.119 and fundraising campaigns, and they created educational materials that helped 0:21:42.160 --> 0:21:46.560 people understand their condition and advocate for themselves. And their 0:21:46.600 --> 0:21:49.639 focus wasn't just on treatments and things you could ask for. 0:21:49.800 --> 0:21:53.280 It was also just on dignity, helping people understand their 0:21:53.320 --> 0:21:57.240 condition and advocate for themselves and stop feeling ashamed of 0:21:57.280 --> 0:22:01.440 their skin. In nineteen eighty seven, the NPF funded its 0:22:01.520 --> 0:22:05.800 first grant, the Pilot Program Award. Since then, the NPF 0:22:05.880 --> 0:22:09.159 has invested more than thirty five million dollars to support 0:22:09.240 --> 0:22:13.560 the research of everyone from young doctors to academic scientists 0:22:13.600 --> 0:22:16.480 seeking to learn more about how to treat and live 0:22:16.560 --> 0:22:19.960 with soiasis, and on their website they list the active 0:22:20.000 --> 0:22:23.000 research projects that they are currently funding. This is very 0:22:23.040 --> 0:22:25.320 interesting reading if you've got some time and want to 0:22:25.400 --> 0:22:28.200 know what kind of things they are focusing their financial 0:22:28.240 --> 0:22:31.360 support on. It's pretty cool. I didn't want to spoiler 0:22:31.440 --> 0:22:33.600 you earlier when you asked, but Beverly passed away in 0:22:33.640 --> 0:22:37.280 two thousand and three, so you can't, unfortunately thank her 0:22:37.320 --> 0:22:39.399 in person, but you can thank her in the more 0:22:39.480 --> 0:22:42.480 general sense. That was just a couple of months before 0:22:42.560 --> 0:22:47.360 the National Toriasis Foundation's first official Capitol Hill Day. We're 0:22:47.400 --> 0:22:51.560 an army of NPF personnel and volunteers went to meet 0:22:51.600 --> 0:22:55.400 with congressional leaders and members to advocate for people with psoriasis. 0:22:56.000 --> 0:22:57.560