Speaker 1: Rube.
Speaker 2: I'm Holly Fry and this is Season two of Our Skin,
Speaker 2: a personal discovery podcast. Today we are so excited to
Speaker 2: welcome Ivy Smith to Our Skin. Ivy is a model,
Speaker 2: an actress, a stunt driver, and a passionate advocate for
Speaker 2: soriasis awareness whose journey is as multifaceted as it is powerful.
Speaker 2: And like other guests we've had, Ivy first noticed signs
Speaker 2: of soriasis shortly after having a child, in this case,
Speaker 2: after the birth of her second child, and at the
Speaker 2: time she wasn't sure what was happening, just that her
Speaker 2: body was reacting in a way that felt unfamiliar and overwhelming.
Speaker 2: During her third pregnancy, she experienced another major flare, but
Speaker 2: like many people, Ivy didn't seek treatment right away. It
Speaker 2: actually took time to seek out a diagnosis. Since then,
Speaker 2: she has used her platform to speak honestly about the
Speaker 2: emotional and physical realities of life with psoriasis. Her openness
Speaker 2: has helped others feel less alone, and it pushes the
Speaker 2: entertainment industry toward a more inclusive vision of beauty and health.
Speaker 2: So today we are talking to Ivy about visibility, vulnerability,
Speaker 2: and the wild ride that brought her here, Ivy, Welcome
Speaker 2: to our skin. We are so glad you're here.
Speaker 1: Thank you for having me.
Speaker 2: Take us back to when you first noticed changes in
Speaker 2: your skin and thought like, this might be psoriasis. That
Speaker 2: was right after you had your second child, right.
Speaker 3: Correct, Yes, so I actually didn't know x risies existed.
Speaker 3: I just saw like a lot of flakes coming out
Speaker 3: from my hair and it was itchy and painful, and
Speaker 3: I was like, what's going on, Well, maybe my hormones
Speaker 3: were changing because I had another kid. Yeah, I don't
Speaker 3: know what's going on. And I was very stressed out
Speaker 3: at the time, trying to balance another baby and work, money,
Speaker 3: life in general. And I kind of waited for a
Speaker 3: bit and it got worse and worse and worse, and
Speaker 3: it was very painful, and I was like, I need
Speaker 3: to do something about this. So I finally went to
Speaker 3: the doctor like a year later. And I know I
Speaker 3: shouldn't have done that, you know, I should have went sooner.
Speaker 3: Maybe I could have helped my crisis journey a little
Speaker 3: bit better. And that's when my doctor told me it
Speaker 3: was crisis. I didn't know what it was, and they
Speaker 3: gave me some pamphlets to read about it.
Speaker 2: I hope you will give yourself a little bit of
Speaker 2: grace though, because when you have a newborn, it's not
Speaker 2: like you're like and let me add another doctor's appointment
Speaker 2: to the mix. So I'm not gonna guilt you at
Speaker 2: all for waiting a while to get it checked out.
Speaker 2: You then had another flair during your third pregnancy. Did
Speaker 2: you talk to your doctors about that pattern? Pregnancy seem
Speaker 2: to be such a trigger for you.
Speaker 3: I didn't even think about it at the time. I
Speaker 3: just thought, you know, oh, it just came back, another flare.
Speaker 3: You know, why am I so stressed?
Speaker 2: Why am I so stressed with? Yeah, exactly three kids
Speaker 2: and a job. But why I don't understand.
Speaker 1: Yeah, you know.
Speaker 2: It is interesting because so many of the people we've
Speaker 2: talked to on the show, pregnancy is when it first
Speaker 2: shows up for them, So there is clearly a link there.
Speaker 2: I'm curious, though, now you are past that third pregnancy,
Speaker 2: how does your psoriasis show up now? Have the patterns
Speaker 2: of what triggers flares changed over time? Have you identified
Speaker 2: different patterns?
Speaker 3: So it is actually it was usually on the back
Speaker 3: of my scalp, in my ears, around my ears, and
Speaker 3: then it's going on my other parts of my body,
Speaker 3: like my arm, my hand, my face, my neck, my legs.
Speaker 3: So it's it's spreading. I guess you could say, I
Speaker 3: don't know the term or if it is spreading or
Speaker 3: it's just my immune system going off and saying, hey,
Speaker 3: you're stressed out, chill out.
Speaker 2: You are an actress and a model, among other things,
Speaker 2: so of course in those industries your appearance is something
Speaker 2: that you have to confront for work a lot of
Speaker 2: the time. How did people react on sets if you
Speaker 2: were there and having a flare and was there an
Speaker 2: understanding early on of whatsiriasis was and what you were
Speaker 2: actually going through?
Speaker 1: So good question.
Speaker 3: In the beginning, I'm still alone embarrassed, but I'm trying
Speaker 3: to like get over that. But in the beginning, I
Speaker 3: had to tell the makeup artist the hair person that hey,
Speaker 3: I have soriasis and it's not contagious. Actually, back then
Speaker 3: they didn't know a lot about psiasis, so I had
Speaker 3: to kind of educate them and tell them what it is.
Speaker 1: And in a way in the beginning.
Speaker 3: Some were little standoffish and like okay, you know, I
Speaker 3: could see it in their face, like, yeah, they're using
Speaker 3: makeup brushes on me and like on parts of my
Speaker 3: skin or to cover it up. And I felt that
Speaker 3: it was a little uneas then. But now when I
Speaker 3: go to shoots, they know what it is and most
Speaker 3: of them have it as well, so they're like, Okay,
Speaker 3: we got this.
Speaker 2: That's cool. You just mentioned and you've spoken in other
Speaker 2: places really candidly about the self consciousness that you have
Speaker 2: felt during flares. Was there a particular moment when you
Speaker 2: started to challenge that instinct within yourself and share your
Speaker 2: skin more openly or was it a bit of a
Speaker 2: slower shift.
Speaker 3: Back then, it was a slower shift because I was
Speaker 3: telling people about it and they didn't know what it was.
Speaker 3: Not that many people knew about it, and I felt
Speaker 3: kind of alone, like am I an outcast? What's going on?
Speaker 3: What's going on with my body? Am I like an alien?
Speaker 3: People look at at me like, oh, what is that?
Speaker 3: Get away from me? They didn't say that per se,
Speaker 3: but I felt that right. I felt very insecure in
Speaker 3: my body back then.
Speaker 2: I'm curious do you think maybe subconsciously, as you were
Speaker 2: explaining it to other people and kind of self advocating,
Speaker 2: do you think you heard yourself and that helped ease
Speaker 2: that transition. When you're saying these things and you're explaining
Speaker 2: them over and over, are you also receiving that message
Speaker 2: and maybe getting a little more comfortable with the idea.
Speaker 3: I think when more people came out, I didn't feel alone,
Speaker 3: and it made me feel a lot more comfortable and
Speaker 3: welcoming to show it.
Speaker 1: Who cares? I have sur rises? Yeah, what do you have?
Speaker 3: You know?
Speaker 1: But noah.
Speaker 3: I felt much more comfortable as people started saying I
Speaker 3: have it too, or my brother has or my sister
Speaker 3: has it, or my mom has it, And it felt
Speaker 3: more comfortable and I started saying to myself like, hey,
Speaker 3: this is normal now, let me just embrace it. And
Speaker 3: then my insecurity started to fade away. I felt good
Speaker 3: about myself.
Speaker 2: I understand you are also a stunt driver. I have
Speaker 2: so many questions how did you gain this particular skill?
Speaker 2: And also, aren't you supposed to be avoiding stress theoretically
Speaker 2: or is it for you something that's actually a stress release.
Speaker 2: I could see that being the case as well.
Speaker 3: It's like a mental game when I'm doing stunts or
Speaker 3: I'm on a show and they need me to do
Speaker 3: certain things, it's like playing chess, Like okay, how am
Speaker 3: I going to do this? If I do this, they
Speaker 3: will do that. Or if I do this, I could
Speaker 3: do that. So it's kind of mentally, I guess, challenging
Speaker 3: me in a way, and then I can overcome it
Speaker 3: and it feels good. It's like satisfying to be like, Okay,
Speaker 3: I did it feels good and then the thrill of
Speaker 3: the I guess you know, it's like when you're riding
Speaker 3: on a roller coaster. H you'reic heart dropped and it's
Speaker 3: like the blood is pumping. It feels like exhilarating to me.
Speaker 3: So when I race and I do that and do
Speaker 3: stunts and stuff like that, I love it.
Speaker 2: You get the adrenaline rush of the danger and then
Speaker 2: the dopamine hit of having solved the problem. Yes, I
Speaker 2: can see where that's powerful. Chronic conditions like siriasis can
Speaker 2: really shake a person's sense of control. And I'm wondering
Speaker 2: how you, and this may tie to the answer you
Speaker 2: just gave me, how you manage those moments when siasis
Speaker 2: still flares, even after all of your inner work and advocacy.
Speaker 2: Do you look at that as a puzzle that you
Speaker 2: have to solve now? To you?
Speaker 3: Okay, so of course, I understand that stress kind of
Speaker 3: flares it out. It's hard to manage stress, but I
Speaker 3: know I have to, and that's another challenge I'm trying
Speaker 3: to deal with and overcome. But I'm trying to learn
Speaker 3: ways to kind of alleviate that, like working out. I
Speaker 3: just went to gym this morning and just doing breathing
Speaker 3: exercises to kind of help and understand that I can't
Speaker 3: control everything and learn how to let it go.
Speaker 2: One thing that you mentioned earlier and that you've expressed
Speaker 2: in other interviews is that you do wish you had
Speaker 2: sought medical treatment sooner. And we talked a little bit
Speaker 2: about some of the reasons that might have been the case.
Speaker 2: But what was the moment that got you to say,
Speaker 2: all right, let's go to the doctor. I need an appointment.
Speaker 3: Well, I knew that whatever was happening to me was
Speaker 3: not norramal at all. And it was embarrassing to even
Speaker 3: wear a dark colored shirt because all the flakes will
Speaker 3: come out and it just shows up in my hair
Speaker 3: because I have black hair, so it's definitely going to shine.
Speaker 3: And I can't put my hair in a ponytail like
Speaker 3: I used to because they'll see it. It was getting
Speaker 3: to a point where I couldn't live in a comfortable
Speaker 3: stage at life, and I was trying to hide it
Speaker 3: and it was getting warm, and then I have to
Speaker 3: figure out a new way to hide it, and I'm
Speaker 3: just like, I need to get this checked. Not only
Speaker 3: hiding it was an issue is the pain and it
Speaker 3: was very annoying.
Speaker 2: It's one of those things that causes like a stress spiral. Right.
Speaker 2: The stress contributes to it, but then you get stressed
Speaker 2: because you're trying to conceal it, and then it gets
Speaker 2: worse and it just keeps going out of control. It is,
Speaker 2: as we know from talking to a lot of people,
Speaker 2: not easy to navigatesoriasis solow and it is also not
Speaker 2: easy to reach out and ask for help. Today, as
Speaker 2: we step into skin history, we're going to tell the
Speaker 2: story of how one classified ad a birthday gift turned
Speaker 2: into the largest national patient advocacy group for people with psoriasis,
Speaker 2: that is the National Psoriasis Foundation. We're going to talk
Speaker 2: about that, and I'm going to bring Ivy along for
Speaker 2: the ride right after this. For today's trip through skin history,
Speaker 2: we are not headed to ancient Egypt or nineteenth century
Speaker 2: France this time. Don't worry. We're not talking about gross treatments.
Speaker 2: We are traveling to a much more recent time. We
Speaker 2: are headed to nineteen sixty six, to Portland, Oregon. So
Speaker 2: picture it a black and white classified ad section tucked
Speaker 2: in the back pages of the Oregonian newspaper, and in
Speaker 2: between listings for used cars and help wanted ads, one
Speaker 2: small notice catches the eye. It's from someone looking to
Speaker 2: connect with others who have psyriasis. Just a few words,
Speaker 2: but this ad changed everything because the person it was
Speaker 2: placed for, Beverly Foster, was desperate and her husband Larry,
Speaker 2: placed this ad for her as a birthday gift. She
Speaker 2: had very severe psoriasis covering nearly eighty percent of her body,
Speaker 2: and the itching was relentless, and the pain was constant,
Speaker 2: and the emotional understandably almost unbearable. Beverly was really lonely,
Speaker 2: and she wanted to know if anyone else had any
Speaker 2: experience like hers. IVY. How sweet is it that her
Speaker 2: husband tried to figure out a way to find her
Speaker 2: friends by putting out this ad.
Speaker 1: That is very sweet. I wish I had that support
Speaker 1: when I had my first flare, And.
Speaker 2: Of course back then there was no internet right there
Speaker 2: weren't patient communities. There was no national psoriasis Foundation. There
Speaker 2: were just a few pamphlets that you could get from
Speaker 2: your doctor's office, and otherwise it was pretty much silence.
Speaker 2: In the nineteen sixties, treatment options for ciriasis were really
Speaker 2: really limited. Often ineffective coal tar preparations, which were messy
Speaker 2: and smelly, were among the few available treatments. Some doctors
Speaker 2: would prescribe cordico steroids, but of course those come with
Speaker 2: significant side effects, especially when used long term, and many
Speaker 2: patients were kind of just told to live with it,
Speaker 2: or they were prescribed treatment that barely made a dent
Speaker 2: in their symptoms. So for someone like Beverly who psoriasis
Speaker 2: was so extensive, finding relief felt nearly impossible. And at
Speaker 2: this point, the medical community did not fully understand poriasis
Speaker 2: as an autoimmune condition. That knowledge was just starting to
Speaker 2: come into focus in the nineteen sixties, and a lot
Speaker 2: of doctors treated it just as a skin disorder, not
Speaker 2: recognizing the complex autoimmunity that actually causes the disease. So
Speaker 2: there was a general sense that, like dandriff or dry skin,
Speaker 2: psoriasis wasn't a big deal, and that meant that treatments
Speaker 2: were often superficial At best. They addressed symptoms rather than
Speaker 2: the underlying causes. Soriasis in the nineteen sixties wasn't just misunderstood,
Speaker 2: it was largely invisible because all of this misunderstanding came
Speaker 2: with fears of stigma. Ivy. You have talked about even
Speaker 2: in this time of advocacy and having more information, there
Speaker 2: is still lots of stigma, right.
Speaker 1: I would think.
Speaker 3: So now that we have more knowledge of everything or
Speaker 3: about psoriasis, I feel that helps. It takes one step
Speaker 3: and it just snowballs into something bigger and better.
Speaker 2: I know. I think it's a perfect thing to say
Speaker 2: because it ties in very much a Beverly's story because
Speaker 2: the general public at this point knew almost nothing about
Speaker 2: the condition. It's kind of like how you mentioned earlier,
Speaker 2: like when you first started explaining to makeup artists what
Speaker 2: was going on. They didn't know, and the little that
Speaker 2: the public did know at this point was often completely wrong.
Speaker 2: A lot of people still thoughtsoriasis was contagious, or that
Speaker 2: it was dirty and had to do with hygiene, or
Speaker 2: that it was somehow shameful, and this stigma led a
Speaker 2: lot of people to hide their symptoms and their stories,
Speaker 2: and dermatologists even were pretty ill equipped, and general practitioners
Speaker 2: were even less prepared. There were no standard treatments that
Speaker 2: worked well for everyone. Research funding was minimal, and people
Speaker 2: with psoriasis felt isolated and ashamed and alone, something that
Speaker 2: a lot of people today still feel before they find
Speaker 2: all of these communities. So when Larry Foster placed that
Speaker 2: classified ad for his wife, he was really doing a
Speaker 2: quietly radical thing. He was asking people with psoriasis to
Speaker 2: raise their hands and say I'm here and kind of
Speaker 2: come out in that regard. And the cool thing is
Speaker 2: people responded. It is reported that the first day that
Speaker 2: that ad appeared, hundreds of people contacted Beverly. People from
Speaker 2: across Oregon and even farther wrote or called to say
Speaker 2: I have this too. I have psoriasis, or my spouse does,
Speaker 2: or my child has it, and we don't know where
Speaker 2: to turn either. Can you relate to that feeling? Do
Speaker 2: you think you would have responded to an AD like
Speaker 2: this if you had discovered your psoriasis in a time
Speaker 2: when there wasn't a lot of online information and doctors
Speaker 2: were not as informed.
Speaker 3: Oh yeah, Like I told you earlier that I felt
Speaker 3: isolated and like an alien. I didn't know anybody that
Speaker 3: hadn't then slowly started coming out. So definitely, if I
Speaker 3: saw that ad, I would be thrilled in. I would
Speaker 3: definitely reach out and be a part of a trend group,
Speaker 3: you know, the Sizes team, right.
Speaker 2: I have to imagine that had to feel like this
Speaker 2: little flag of hope too, just to recognize someone else
Speaker 2: has stated publicly like, hey I have this, I'm looking
Speaker 2: for other people like me. If you're the other person
Speaker 2: like them, and you've never had anybody else say that,
Speaker 2: that's got to be like, that's the thrill in the
Speaker 2: rush right there. So people poured out their frustrations and
Speaker 2: their fears when contacting Beverly. Some of them had never
Speaker 2: spoken to anyone else about their psiriasis before. Others had
Speaker 2: been through years of ineffective treatment and feeling isolated, and
Speaker 2: a lot, just like Beverly, were overwhelmed by the emotional
Speaker 2: toll and the volume of correspondents that she received really
Speaker 2: surprised Beverly. But even more striking was the depth of
Speaker 2: pain and loneliness in those letters and those calls. It
Speaker 2: was so abundantly clear she was not alone. There was
Speaker 2: this whole community, and it was one that hadn't even
Speaker 2: known that it existed. So she started gathering those letters,
Speaker 2: she started calling back, and then she did something that
Speaker 2: would shape the next sixty years of patient advocacy. She
Speaker 2: decided to organize I love this. She started a local
Speaker 2: support group for people that were living with psoriasis. And
Speaker 2: this started out very, very small, a few dozen people
Speaker 2: gathering in church basements in Portland or community centers so
Speaker 2: that they could share their stories and ask questions and
Speaker 2: just support one another. But it did not stay small
Speaker 2: for very long. Word spread, more letters kept coming in,
Speaker 2: and soon this little support group was getting inquiries from
Speaker 2: across the country. And so what started as this simple
Speaker 2: casual gathering grew very quickly beyond something that a single
Speaker 2: person could manage, and Beverly realized people didn't just need
Speaker 2: local support, they need did a national voice. So she
Speaker 2: started the work of transforming this Oregon based support group
Speaker 2: into something much bigger. This seems to me so daunting,
Speaker 2: but I have to feel like it must have been
Speaker 2: such an empowering moment to realize that you inadvertently became
Speaker 2: a change maker, to want to transition into this that
Speaker 2: transition going National was not easy. Beverly had a lot
Speaker 2: to do. She had to learn about nonprofit law, she
Speaker 2: had to learn about fundraising and organizational management. All throughout
Speaker 2: this she was also managing her own very severe psoriasis.
Speaker 2: But she was very determined to ensure that no one
Speaker 2: else would have to feel alone as she had felt.
Speaker 2: I would imagine there would be a sense of identifying
Speaker 2: with this idea for you.
Speaker 3: Yes, it makes me want to like, is she alive?
Speaker 3: Can I contact her now and say thank you?
Speaker 2: Beverly? Beverly then, just a year after she started, so
Speaker 2: we're at nineteen sixty seven now, Beverly's local support group
Speaker 2: officially became the National Soriasis Foundation, and Beverly served as
Speaker 2: the organization's driving force. In those early years. She worked
Speaker 2: absolutely tirelessly to build the infrastructure that would support Sorias's
Speaker 2: patients nationwide, and the foundation started small. It was Beverly
Speaker 2: and a handful of volunteers that were working out of
Speaker 2: their homes, but it grew very rapidly. She understood that
Speaker 2: creating lasting change required a lot more than just good intentions.
Speaker 2: It required strategic thinking and medical expertise, and sustained advocacy
Speaker 2: Beverly was the executive director of the National Soriasis Foundation
Speaker 2: throughout its first crucial decade. She created public awareness of
Speaker 2: the fact that siriasis is not contagious and also can
Speaker 2: be debilitating and severe in an era during which ad
Speaker 2: campaigns put this disease in the same category as dandriff.
Speaker 2: She lobbied, she actually testified before Congress to establish funding
Speaker 2: for medical research and public education, and she was a
Speaker 2: patient advocate within the medical community. Have you had any
Speaker 2: contact with the National Psoriasis Foundation or other patient groups.
Speaker 1: I have not, but I am in a group on Facebook.
Speaker 3: I also tried to see if I could educate other
Speaker 3: people with it, but I would definitely be interested in
Speaker 3: another group seeing how I can help.
Speaker 2: Do you feel like you have a good sense of
Speaker 2: support at this point in your journey with psoriasis?
Speaker 3: Oh?
Speaker 1: Yeah, definitely. I found out my dad had it.
Speaker 2: He didn't, Oh my goodness.
Speaker 1: Yeah, and so he is a good support.
Speaker 2: Did that change your relationship with your dad?
Speaker 3: We always had a good relationship, but it also definitely
Speaker 3: made us closer, like, Oh, let's see what's stuff we
Speaker 3: could show each other.
Speaker 2: Hey, this is my that is amazing. So there's a
Speaker 2: little blip in Beverly's story. We don't know exactly what happened,
Speaker 2: but Beverly and Larry's marriage did end at some point
Speaker 2: during this whole journey. But she did meet the man
Speaker 2: that she would spend the rest of her life with
Speaker 2: at the twentieth anniversary party for the National Soriasis Foundation.
Speaker 2: That was doctor Kenneth Halprin. They got married in nineteen
Speaker 2: eighty nine and together they continued fundraising and advocating for patients,
Speaker 2: including being advocates for the AIDS community in the nineteen nineties.
Speaker 2: So they were way ahead of the curve in terms
Speaker 2: of really taking care of people in very organized ways.
Speaker 2: But I want to talk more about this little organization
Speaker 2: that could, the National Soriasis Foundation. By the early nineteen seventies,
Speaker 2: the National Soriasis Foundation had launched patient education efforts, newsletters,
Speaker 2: and fundraising campaigns, and they created educational materials that helped
Speaker 2: people understand their condition and advocate for themselves. And their
Speaker 2: focus wasn't just on treatments and things you could ask for.
Speaker 2: It was also just on dignity, helping people understand their
Speaker 2: condition and advocate for themselves and stop feeling ashamed of
Speaker 2: their skin. In nineteen eighty seven, the NPF funded its
Speaker 2: first grant, the Pilot Program Award. Since then, the NPF
Speaker 2: has invested more than thirty five million dollars to support
Speaker 2: the research of everyone from young doctors to academic scientists
Speaker 2: seeking to learn more about how to treat and live
Speaker 2: with soiasis, and on their website they list the active
Speaker 2: research projects that they are currently funding. This is very
Speaker 2: interesting reading if you've got some time and want to
Speaker 2: know what kind of things they are focusing their financial
Speaker 2: support on. It's pretty cool. I didn't want to spoiler
Speaker 2: you earlier when you asked, but Beverly passed away in
Speaker 2: two thousand and three, so you can't, unfortunately thank her
Speaker 2: in person, but you can thank her in the more
Speaker 2: general sense. That was just a couple of months before
Speaker 2: the National Toriasis Foundation's first official Capitol Hill Day. We're
Speaker 2: an army of NPF personnel and volunteers went to meet
Speaker 2: with congressional leaders and members to advocate for people with psoriasis.
Speaker 2: I'm getting very choked up about this.
Speaker 1: I know that this is a great inspiring story. I
Speaker 1: didn't even know about this.
Speaker 2: I know she's great. I really liked the idea that
Speaker 2: even though Beverly wasn't there for it, she was there
Speaker 2: for all of the planning, and she knew that this
Speaker 2: big moment was coming today. The National Soriasis Foundation is,
Speaker 2: of course, one of the world's leading patient advocacy organizations.
Speaker 2: It is the world's largest nonprofit serving people with psoriasis
Speaker 2: and soiatic arthritis, and it serves more than three million
Speaker 2: people annually through patient and professional health education and advocacy initiatives.
Speaker 2: This is so amazing to me because it just started
Speaker 2: with a few words in a newspaper. The Foundation's current
Speaker 2: scope is really remarkable, particularly when you consider those humble beginnings.
Speaker 2: Their research portfolio includes everything from basic science investigations into
Speaker 2: the immune system mechanisms underlying poriasis to clinical trials that
Speaker 2: are testing new treatments, and the foundation's advocacy work has
Speaker 2: been particularly impactful. Volunteers and end PF staff worked with
Speaker 2: Congress to establish and fund a federal Sooriatic Patient Disease Registry.
Speaker 2: So this registry actually helps researchers and policymakers understand the
Speaker 2: true burden of sooriatic disease and guides treatment development. So
Speaker 2: the concept of registry can sound a little scary sometimes,
Speaker 2: but this is a really good way to map what's
Speaker 2: really going on. The Foundation, though, has never forgotten those
Speaker 2: grassroots origins. Their walks to Cure Soriasis, raise funds for
Speaker 2: advocacy and research. It brings together local communities, just like
Speaker 2: Beverly's original support group did back in Portland. You can
Speaker 2: actually do an Internet search and find out if there's
Speaker 2: one near you. The Foundation's educational initiatives are incredibly comprehensive.
Speaker 2: They provide resources for patients who are navigating their treatment decisions.
Speaker 2: They provide support for families that are dealing with psoriasis.
Speaker 2: They also provide support for training health care providers. They
Speaker 2: have created online communities where people can connect. So it's
Speaker 2: the digital version, essentially of these letters and meetings that
Speaker 2: Beverly was part of all of those years ago. And
Speaker 2: they continue to advocate for mental health resources for patients
Speaker 2: because there's recognition now that psoriasis affects a lot more
Speaker 2: than just your skin. The Foundation has also expanded it's
Speaker 2: focus to include soriatic arthritis. That is, in case anybody
Speaker 2: hasn't been listening to our prior episodes, the joint disease
Speaker 2: that affects up to thirty percent of people with siriasis,
Speaker 2: and this expansion really does reflect this growing understanding that
Speaker 2: syriasis is a systemic condition that can affect multiple body systems.
Speaker 2: I think this also is kind of reflected in that
Speaker 2: everybody is learning about their own version of siriasis all
Speaker 2: the time. You mentioned earlier that it's starting to appear
Speaker 2: in place as it didn't before, and that's one of
Speaker 2: the many things that researchers can work on and try
Speaker 2: to understand. So these foundations are helping everybody to really
Speaker 2: gain a better perspective of what their bodies are doing.
Speaker 2: And this foundation's impact is visible not only in Washington,
Speaker 2: d c. Or in pharmaceutical journals, but also in patient
Speaker 2: support groups, facebook forums, local meetups, and digital campaigns that
Speaker 2: remind people you're not alone. You mentioned your online groups
Speaker 2: and how just knowing that other people are out there
Speaker 2: is helpful, whether you're actively participating or not. And it
Speaker 2: all tracks back to one woman in Oregon who just
Speaker 2: decided to ask for what she needed. Beverly Foster probably
Speaker 2: didn't think she was a revolutionary, but that birthday, Wish
Speaker 2: launched one of the most important advocacy organizations in American
Speaker 2: health history, and it proved that just one little voice
Speaker 2: asking a question can become a movement. This is so sweet.
Speaker 2: They very choked up over Beverly.
Speaker 1: Awesome story.
Speaker 2: She's pretty great, and it also really really illustrates something
Speaker 2: that's come up and you have mentioned it too, this
Speaker 2: idea that we all need connection, and that's a big
Speaker 2: part of the pariasis story. She wasn't putting out an
Speaker 2: ad saying that she wanted to find a cure. She
Speaker 2: just wanted other people. She wanted a community. I love it.
Speaker 1: It's nice.
Speaker 2: I'm obsessed with Beverly. She was so afraid and so
Speaker 2: alone with like eighty percent of her skin affected this way,
Speaker 2: and then she put herself completely out there for the world,
Speaker 2: and in that shift changed the world for so many
Speaker 2: other people. And that's a tradition that really people like
Speaker 2: you are carrying on today. Whether you realize it or not.
Speaker 2: You are also putting yourself out there for the world.
Speaker 2: You have probably inadvertently educated makeup artists and other people
Speaker 2: in the industries that you work in to realize that
Speaker 2: they need to learn more about this. So thank you
Speaker 2: for that.
Speaker 1: Thank you. I don't know it's said. I didn't even
Speaker 1: think about it like that.
Speaker 2: So just being a public person and saying I have
Speaker 2: this I needed to be dealt with and in your
Speaker 2: industry to say, hey, this is what it is, and
Speaker 2: advocating and explaining to those people. They came away from
Speaker 2: that interaction with you knowing more about psoriasis. So you're
Speaker 2: an educator, whether you knew it or not.
Speaker 1: Thank you, Thank you.
Speaker 2: Yeah, it's wonderful. I have two more questions for you today.
Speaker 2: We asked these at the end of every episode. The
Speaker 2: first is what suggestions do you have for people who
Speaker 2: may not have psoriasis themselves but they love someone who
Speaker 2: does and they want to be supportive. What is the
Speaker 2: best advice you can give them?
Speaker 3: I mean having somebody support me trying to help figure
Speaker 3: out what this was. I'm just trying to think back
Speaker 3: when I was like kind of alone and I didn't
Speaker 3: have the best support, Like I didn't know my dad
Speaker 3: had it. So yeah, definitely being supportive and helping me
Speaker 3: learn to love my imperfections.
Speaker 2: Last, but not least, if you could send one message
Speaker 2: to any listeners who might be grappling with their own
Speaker 2: diagnosis or waiting to see a doctor about it, what
Speaker 2: would that be?
Speaker 3: Oh, definitely. I mean, see a doctor, you know, don't
Speaker 3: wait too long like I did. I don't know if
Speaker 3: that would have helped anything, but definitely seek medical personnel
Speaker 3: to help alleviate because I know when I have it,
Speaker 3: it's painful. I still have a flare on my arm
Speaker 3: and it was painful and I'm just like, okay, let
Speaker 3: me put my ointment on it, and it kind of
Speaker 3: alleviated that.
Speaker 1: So, you know, just don't live in pain.
Speaker 2: Yeah, it's a quality of life issue. Yes, well, thank
Speaker 2: you so so much, IV for sharing your story with us.
Speaker 2: Be sure do appreciate it. Our skim is hosted by myself,
Speaker 2: Holly Frye, and executive produced and engineered by Ryan Martz.
Speaker 2: Our executive producer and writer is Meredith Barnes. If you
Speaker 2: enjoy the show, share it with your friends. You can
Speaker 2: also listen and follow on the iHeartRadio app, Apple Podcasts,
Speaker 2: or wherever you get your podcasts.