Latest / Tom's Hirschsprung's Podcast / Episode 93 - With Stacey Haines

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Episode 93 - With Stacey Haines · Tom's Hirschsprung's Podcast

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  Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode, we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
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  Speaker 1: tuning in. Hello, and welcome to episode of Tom's Hirshbrung's Podcast.
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  Speaker 1: I have a little bit of a different one for
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  Speaker 1: you today. I'm joined by Stacy all the way from Why,
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  Speaker 1: which I've never never interviewed anyone from for Why before,
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  Speaker 1: and we're going to talk about something called Rare Patient Voices.
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  Speaker 1: Some of you may be aware of that, either via
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  Speaker 1: the Rare Patient Voices or via little posts on my
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  Speaker 1: Instagram as well. Welcome Stacy, Welcome to the podcast.
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  Speaker 2: So much for having me. I'm so excited to be
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  Speaker 2: here today.
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  Speaker 1: Me too, Thank you so much for coming on.
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  Speaker 2: Now.
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  Speaker 1: I guess we'll get straight down to it and talk
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  Speaker 1: a little bit about what you do. Obviously that you're
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  Speaker 1: the social media manager for Rare Patient Voices. What is it?
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  Speaker 1: How did it start? How did we go from there.
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  Speaker 2: All right, let's just jump right into it. So I
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  Speaker 2: am not only am I with the Social Media Department.
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  Speaker 2: I'm also a part of the patient Outreach team. But
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  Speaker 2: we are rare patient voice. We connect patients and caregivers
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  Speaker 2: to online research studies based on the condition that you
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  Speaker 2: live with every single day. We give individuals an opportunity
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  Speaker 2: to share their experiences and get paid for the time
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  Speaker 2: that they spend on these studies. We have anything from
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  Speaker 2: online surveys, bulletin boards, focus groups, to clinical trials, in
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  Speaker 2: person interviews, all kinds of different opportunities to try out
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  Speaker 2: new medical devices. So individual companies come to us and
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  Speaker 2: we connect all of our patients and caregivers to these
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  Speaker 2: different studies. We have a panel of over one hundred
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  Speaker 2: thousand patients and caregivers and so we sort of hold
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  Speaker 2: the gold standard to filling these studies for different companies.
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  Speaker 2: We are we are very committed to providing real patients
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  Speaker 2: and real caregivers, which in turn produces real results and
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  Speaker 2: real data. So the social the social media department is
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  Speaker 2: my baby. I absolutely love it. We have a great
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  Speaker 2: community within all social media platforms. My favorite is Instagram.
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  Speaker 2: I've used Instagram pretty much my whole entire teenage and
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  Speaker 2: adult life. So and the community there always comes at
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  Speaker 2: us with open arms. I love being able to connect
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  Speaker 2: with individuals, share their stories, be the inspiration for other
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  Speaker 2: people who might just be starting their diagnosis or so
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  Speaker 2: well versed in their diagnosis that they're helping the next
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  Speaker 2: patient or caregiver in their journey. So social media my favorite.
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  Speaker 2: Patient addovacy is my all time favorite as well. I'm
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  Speaker 2: I'm a real people person and not only am I
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  Speaker 2: patient myself, but I'm also a family caregiver to my
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  Speaker 2: daughter who was chronically ill. So connecting with individuals is
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  Speaker 2: what I love to do and then tell you know
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  Speaker 2: I was able to reach out to you. And that's
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  Speaker 2: pretty much what I do and what rare patient voice is.
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  Speaker 2: In a nutshell, we connect patients and caregivers to studies.
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  Speaker 2: You guys in turn complete the studies, You get paid,
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  Speaker 2: and the researchers get the data that we need they
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  Speaker 2: need in order to hopefully make the healthcare system better
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  Speaker 2: for the future.
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  Speaker 1: Fantastic, fantastic and that as well, And I love the
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  Speaker 1: fact that it is real patients, real stories, real data
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  Speaker 1: as opposed to kind of I guess. What I see
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  Speaker 1: quite a lot is people sort of have an estimated
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  Speaker 1: guess and they kind of say, well, I mean you
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  Speaker 1: take hershprungs. For example, the common number is one in
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  Speaker 1: five thousand, but then I've seen one in seven thousand
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  Speaker 1: and one in three thousand. But with you, you have
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  Speaker 1: real data and real people filling out these surveys, which
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  Speaker 1: I imagine is incredibly valuable.
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  Speaker 2: Yeah, and you know, especially in I always like I
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  Speaker 2: always push for individuals to know, especially for people who
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  Speaker 2: don't know who we are and what we do, that
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  Speaker 2: we really are real people. We're real patients, We're real
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  Speaker 2: family caregivers. When you email us or send a message
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  Speaker 2: in our DMS, you are reaching real people. There is
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  Speaker 2: no AI behind any of this. We all live all
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  Speaker 2: over we're scattered all over the world, but we are
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  Speaker 2: one team. And just especially in this whole age of
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  Speaker 2: excuse me AI, there's sometimes a mistrust when it comes
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  Speaker 2: to companies like ours. So I always love to be
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  Speaker 2: able to proudly say, like, you know, we are real people,
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  Speaker 2: we are real individuals. We care about your stories, we
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  Speaker 2: care about you know, your mission or your journey, and
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  Speaker 2: your voice really does matter and connecting the researchers with
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  Speaker 2: real patients with real results versus something that they can
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  Speaker 2: run in through AI and get a statistic. Yeah.
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  Speaker 1: Absolutely, And for anybody who doesn't believe you're real, this
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  Speaker 1: will go on YouTube, so you can watch this on
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  Speaker 1: YouTube instead of just listening that you are actually a
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  Speaker 1: real person and not just an AI generated bot.
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  Speaker 2: Yeah. And I like and I always reiterate that because
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  Speaker 2: sometimes people will, you know, message me on Instagram and
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  Speaker 2: maybe they say a few things that are ugly, but
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  Speaker 2: they're thinking that they're going to be you know, responded
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  Speaker 2: to by an like an automated message, but it's me
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  Speaker 2: and I'm like, whoa slow down, You'll have to use
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  Speaker 2: that term with me, Like, let's make this work, Let's
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  Speaker 2: figure out what's going on, you know what I mean. Like,
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  Speaker 2: it's just it's nice to have that real personal connection
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  Speaker 2: and I really hold that very near and dear to me.
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  Speaker 2: So I love being part of that, and I love
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  Speaker 2: being you know, in the forefront at rare patient voice
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  Speaker 2: and being able to head that.
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  Speaker 1: Yeah, definitely. And as you said, you're a people person
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  Speaker 1: and it takes a it takes a people person to
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  Speaker 1: do that. I mean, you can't I imagine, you can't
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  Speaker 1: do this job without being sort of that front facing,
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  Speaker 1: enjoying working with people. You know, you can't just sort
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  Speaker 1: of be sitting there doing papers and whatnot. I imagine.
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  Speaker 1: So if you take us back to I guess the
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  Speaker 1: beginning of Rare Patient Voices started in twenty thirteen with
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  Speaker 1: am I right in saying where's Michael the West.
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  Speaker 2: Michael's are is the founder of Rare Patient Voice, and
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  Speaker 2: he's been in market research pretty much forever. It's what
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  Speaker 2: he did. He worked for big corporate research companies when
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  Speaker 2: he was younger and found a niche for this hole
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  Speaker 2: in the medical system where researchers were looking for individuals
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  Speaker 2: and how hard it was for them to fill and
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  Speaker 2: all randomly, one day somebody asked if he knew anybody
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  Speaker 2: with hemophilia, right, So he got this like aha moment,
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  Speaker 2: like he's doing all of these different market research studies
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  Speaker 2: to fill spices and you know, like market research on
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  Speaker 2: you know, different spices and this and that and that
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  Speaker 2: and this, and he was like, well, what if we
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  Speaker 2: could take it to a whole other level. And he
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  Speaker 2: created the very first hemophilia panel and was able to
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  Speaker 2: help this client fill this research study, and then so
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  Speaker 2: from then on it kind of snowballed into this, well,
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  Speaker 2: why can't I do this? Right? So he started Rare
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  Speaker 2: Patient Boys and it just built and built and built,
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  Speaker 2: and tons of trial and error, right of course, but
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  Speaker 2: he I mean, since then, we have a panel of
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  Speaker 2: over I think we're close to a hundred and eighty
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  Speaker 2: thousand individuals and that comes with over fourteen hundred different
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  Speaker 2: diagnosies in our panel. And so since then it has grown.
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  Speaker 2: There's about forty of us, maybe a little bit more
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  Speaker 2: than forty. We're nine different countries, but we all work remote,
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  Speaker 2: which is really nice. But so since then, Wes has
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  Speaker 2: been able to build this, you know, this resource for
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  Speaker 2: individuals to use, and like I had stated earlier, we
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  Speaker 2: are the gold standard and we work really hard to
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  Speaker 2: make sure that we do not have fraudulent patients or caregivers.
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  Speaker 2: Because I had no idea that individuals will sign up
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  Speaker 2: to Rare Patient Voice and completely lie about everything just
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  Speaker 2: to make one hundred bucks. I'd really honest, Oh no,
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  Speaker 2: I just didn't know that was a thing. So we
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  Speaker 2: have a whole entire team specifically that go in and
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  Speaker 2: they not research, but they go in and verify every
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  Speaker 2: single sign up that comes through our desk to make
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  Speaker 2: sure that they are real patients, so that when the
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  Speaker 2: clients do come to us and we book or we
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  Speaker 2: schedule them for an interview what have you with them,
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  Speaker 2: that they're actually somebody with the real condition. So yeah,
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  Speaker 2: it's an ever ever growing company. And being a patient
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  Speaker 2: and being a caregiver myself, it's just it's so amazing
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  Speaker 2: to know that there is a resource, like we're a
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  Speaker 2: patient voice out there. I always say that before I
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  Speaker 2: was ever in the chronic illness community or ever in
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  Speaker 2: involved in any of that, I really only thought that
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  Speaker 2: medical research was specifically clinical trials, right, And so for
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  Speaker 2: a lot of people that's scary, Like you might want
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  Speaker 2: to be an advocate and do things to help change
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  Speaker 2: the future of what's going on with your condition, and
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  Speaker 2: sometimes clinical trials can be scary. We do offer clinical trials,
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  Speaker 2: but research also comes from your experience through you know,
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  Speaker 2: online surveys, right, you can maybe a client is just
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  Speaker 2: looking for whether or not these one hundred and fifty
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  Speaker 2: people have ever taken a certain medication or if they've
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  Speaker 2: ever been medicated for their condition, you know, And this
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  Speaker 2: gives individuals who are not wanting to commit to, you know,
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  Speaker 2: something as big as a clinical trial. They're able to
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  Speaker 2: use their voices through these smaller avenues, but they have
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  Speaker 2: such a great impact as well.
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  Speaker 1: Absolutely, I think that's that's brilliant. I mean, it's it's
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  Speaker 1: that bridging that gap, isn't it between the sort of
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  Speaker 1: full on clinical trial and nothing. I guess and you
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  Speaker 1: said it's fourteen fourteen thousand conditions.
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  Speaker 2: Fourteen, I think we have over fourteen hundred.
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  Speaker 1: Conditioning on hundred, sorry, fourteen hundred conditions, And it's I mean,
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  Speaker 1: I I was having a flake through when you do
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  Speaker 1: various stories and posts on Instagram of so many conditions,
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  Speaker 1: I mean some that I've never really heard of, I've
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  Speaker 1: never even come across before.
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  Speaker 2: And that on our Instagram page. That's just a teeny
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  Speaker 2: bit of how many studies we have on a given day.
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  Speaker 2: So right now at the patient advocacy team, what comes
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  Speaker 2: across my desk is the really hard to find studies
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  Speaker 2: or hard to fill studies. So we might have three
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  Speaker 2: hundred studies at any given time, but there's maybe seventy
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  Speaker 2: or eighty that are a little more like finding a
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  Speaker 2: needle in a haystack. So those studies come to the
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  Speaker 2: Patient Advocacy Team, and it is our job to try
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  Speaker 2: to find that individual that can fit the criteria right
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  Speaker 2: because sometimes researchers are looking for certain gender, you know, ethnicity,
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  Speaker 2: they're looking for certain people who age different age bracket.
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  Speaker 2: There's all kinds of different criteria that individuals might have
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  Speaker 2: to meet in order to actually be involved in certain studies.
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  Speaker 2: So that's our job to reach out to individuals like you, like,
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  Speaker 2: maybe we have a really hard study that we're trying
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  Speaker 2: to fill. So I'll be like, hey, Tom, you know
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  Speaker 2: we have the study and we kind of need your help.
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  Speaker 2: So then you could reach out to your community and say, hey,
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  Speaker 2: if write Patient Voice is looking for a needle in
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  Speaker 2: a haystack and maybe you know somebody in our community
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  Speaker 2: can help fill that. Or there's super simple studies. You know,
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  Speaker 2: maybe we need three thousand people with ezema to answer
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  Speaker 2: a super short survey because they just need you know,
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  Speaker 2: quick data, really quick to push out something that maybe
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  Speaker 2: they're looking to push out. So some of the studies
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  Speaker 2: are a little bit harder to get into, and then
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  Speaker 2: some of the studies are way easier to get into.
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  Speaker 2: But we we email our invites to individuals, so they
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  Speaker 2: come to your email direct and we only email you
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  Speaker 2: for disease specific or conditions specific studies. For instance, I
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  Speaker 2: would never send you a study for a condition that
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  Speaker 2: you don't have, because what would be the point of
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  Speaker 2: filling your inbox with, you know, something that doesn't work
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  Speaker 2: with you. And then the individual, the patient of the caregiver,
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  Speaker 2: has the option to click on that invite and they
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  Speaker 2: can read through the details of the study and if
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  Speaker 2: it's something that maybe they want to try to do,
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  Speaker 2: they can go through the pre screen or questions, and
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  Speaker 2: then if they qualify, we get a hold of you
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  Speaker 2: to schedule any kind of scheduling. If we do, if
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  Speaker 2: it's an online survey, you'll just immediately go right into
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  Speaker 2: that survey. Yeah.
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  Speaker 1: I think that's really really interesting and really good to know,
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  Speaker 1: because sometimes when people sign up the things that they thinking,
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  Speaker 1: am I going to get three million emails, you know,
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  Speaker 1: asking me to do this advertising this for me? And
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  Speaker 1: it's just general marketing stuff. But it's really good to
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  Speaker 1: know that it's it's very specific, it's very direct. You're
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  Speaker 1: only going to send emails to people who have that
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  Speaker 1: condition that can actually help. So I think I think
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  Speaker 1: that's an excellent, excellent way of going about it.
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  Speaker 2: And another thing I like to touch on too, Tom,
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  Speaker 2: is if you sign up to us, you are not
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  Speaker 2: committed to anything. So if we send you an invite
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  Speaker 2: to a study and you see that in your inbox
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  Speaker 2: and you start your blood pressure kids a little bit high,
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  Speaker 2: and you're like, oh my gosh, where Patient Voice sent
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  Speaker 2: us something like, send me something like I have to
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  Speaker 2: commit to this. I have to do that. Like, we
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  Speaker 2: don't want to give you that feeling, right, We are
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  Speaker 2: simply giving you the opportunity to share your experiences through
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  Speaker 2: these different studies, but you don't have to commit to
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  Speaker 2: it if you see one for like, cause a lot
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  Speaker 2: of them are like face to face like we're doing now,
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  Speaker 2: and a lot of people aren't comfortable with that. But
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  Speaker 2: they don't want to sit and see and talk, so
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  Speaker 2: they can just spipe past those and if they see
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  Speaker 2: like an online survey that fits them better, then there's
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  Speaker 2: that option as well.
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  Speaker 1: That's good to know as well. It's like you said,
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  Speaker 1: it's good to have different options because some people don't
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  Speaker 1: like the the face to face some people. I mean,
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  Speaker 1: I just know through my own experience of doing this
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  Speaker 1: podcast with you know, some people want sort of some
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  Speaker 1: people have had sort of pre zoom meetings, if that
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  Speaker 1: makes sense, to just kind of chat through various things,
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  Speaker 1: to know that there are lots of different options out there,
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  Speaker 1: and it's not you're not fully committing to everything. You're
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  Speaker 1: not sort of once you've signed up, you're in it
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  Speaker 1: forever and you can't have a leave. You know, it's
• 16:33
  Speaker 1: not one of those things. And I really like that
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  Speaker 1: about about rare patient voices.
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  Speaker 2: And you can completely excuse me, you can completely opt
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  Speaker 2: out at any time as well, but just and I
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  Speaker 2: would love free of yours to know that when like
• 16:47
  Speaker 2: when we send invites to you, you can immediately email
• 16:51
  Speaker 2: the project manager back and it and it comes to
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  Speaker 2: somebody real They're not we're not just mass pushing out
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  Speaker 2: emails like that. It's not an automated thing. So if
• 17:02
  Speaker 2: you have a question about that study, you can you
• 17:05
  Speaker 2: can reply to that exact email and you'll speak to
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  Speaker 2: a project manager from your patient voice.
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  Speaker 1: It's really good to know, really really good tonight as well,
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  Speaker 1: because it's again it's that like we said before, is
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  Speaker 1: that sometimes you get emails from various places and studies
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  Speaker 1: and it seems very automated, and it's kind of like
• 17:26
  Speaker 1: very generic, but this isn't. It's very specific, and it's
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  Speaker 1: it's personal yep.
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  Speaker 2: And and we are always more than welcome to answer
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  Speaker 2: any questions that anybody might have in regards to any
• 17:37
  Speaker 2: of the studies that come to their inbox. I want
• 17:40
  Speaker 2: to reiterate too, that we do pay at one hundred
• 17:43
  Speaker 2: and twenty dollars an hour, at a rate of one
• 17:44
  Speaker 2: hundred and twenty dollars an hour, so and that for
• 17:48
  Speaker 2: your viewers it might be a little bit different just
• 17:51
  Speaker 2: because of your your location, but we do pay one
• 17:55
  Speaker 2: hundred and twenty dollars an hour in US dollars. So
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  Speaker 2: if a study for some reason takes an hour, you'll
• 18:02
  Speaker 2: get a check from your patient voice for one hundred
• 18:04
  Speaker 2: and twenty dollars an hour or more. So we have
• 18:08
  Speaker 2: a study that's just thirty minutes, you'll probably be compensated
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  Speaker 2: sixty dollars and sometimes more so we're in the range
• 18:15
  Speaker 2: of one hundred and twenty an hour. Wow. Just great
• 18:18
  Speaker 2: because one, research in general is great for people to
• 18:22
  Speaker 2: participate in, but if they can be compensated for their time,
• 18:24
  Speaker 2: then why not.
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  Speaker 1: Yeah. Absolutely, And it's obviously that incentive for I mean
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  Speaker 1: some people might do it a free who does, but
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  Speaker 1: it's it's that incentive to go, oh yeah, I'll do this,
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  Speaker 1: And it's it's win win, isn't it. They earn money
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  Speaker 1: from it, they help people, they help you, you know.
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  Speaker 1: It's one of those sort of win win courses. I guess.
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  Speaker 2: Yeah. Yeah, it's very it's rewarding for everybody really because
• 18:53
  Speaker 2: we're all like when I see conditions of like my
• 18:55
  Speaker 2: daughter has, when I see hers come up on the screen,
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  Speaker 2: I'm like, oh my gosh, I wonder what they're they're
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  Speaker 2: studying right now. Right, So it's like when you see
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  Speaker 2: your condition, it's like there are researchers out there thinking
• 19:06
  Speaker 2: about you and your condition, right, because there's so many,
• 19:10
  Speaker 2: so many conditions that you know aren't in the forefront yet,
• 19:14
  Speaker 2: you know. So when you see something, when I see
• 19:16
  Speaker 2: something come across my desk and I'm like, oh, oh
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  Speaker 2: my gosh, I wonder what they're researching, like, you know,
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  Speaker 2: So it's really neat, it's very rewarning. It feels good.
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  Speaker 2: I love being able to be a part of this
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  Speaker 2: and pushing it out to the masses as well.
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  Speaker 1: Yeah, and I think for a lot of rare conditions. Well,
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  Speaker 1: I guess conditions in general, that there are so many
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  Speaker 1: different types and variants and all sorts of experiences that
• 19:45
  Speaker 1: having just seen this in my own condition, that seemed
• 19:48
  Speaker 1: to be invaluable for people because there will be something
• 19:52
  Speaker 1: that will take from it and go, oh, I didn't
• 19:54
  Speaker 1: know that could happen, or I didn't know that this
• 19:58
  Speaker 1: type of medication or side effect or whatever it may be.
• 20:02
  Speaker 1: So I guess that's really really important as well.
• 20:05
  Speaker 2: Yeah, and there's no one story the same, you know,
• 20:08
  Speaker 2: like we may carry the same condition, but our experiences
• 20:12
  Speaker 2: might not be the same, you know. And I think
• 20:14
  Speaker 2: that's really important, especially with the social media platform that
• 20:19
  Speaker 2: I can push out, you know, like, just because this
• 20:22
  Speaker 2: is how your journey went doesn't mean that this is
• 20:25
  Speaker 2: how this person's journey is going to go. And I
• 20:27
  Speaker 2: think that's really important for people to understand because just
• 20:32
  Speaker 2: even with mental health issues, right like, you could be
• 20:36
  Speaker 2: experiencing this condition this way, and you're doing great and
• 20:39
  Speaker 2: everything's awesome, and you have really supportive doctors, and you
• 20:41
  Speaker 2: have supportive family members and friends, but then right across
• 20:45
  Speaker 2: the street there's a person who's going through the same
• 20:47
  Speaker 2: exact things you are. They don't have the support and
• 20:50
  Speaker 2: they don't have the correct doctors, you know. So I
• 20:53
  Speaker 2: love being able to use our Instagram as a resource
• 20:56
  Speaker 2: for individuals like I'd love to be able to enter
• 20:59
  Speaker 2: you you to our community because maybe there's ten fifteen
• 21:03
  Speaker 2: people in our community that have the same condition and
• 21:06
  Speaker 2: didn't know that. You know, you were a resource and
• 21:08
  Speaker 2: you were an option and a connection. So I love
• 21:11
  Speaker 2: being able to just connect. And it's just it's so
• 21:14
  Speaker 2: important to me.
• 21:15
  Speaker 1: Yeah. Yeah, I mean I get messages every week from
• 21:18
  Speaker 1: people saying, oh, I didn't know there's a Hirschbrugs podcast.
• 21:21
  Speaker 1: I mean, you know, but why would you? I guess
• 21:24
  Speaker 1: it's quite a niche thing, but it's And I know
• 21:27
  Speaker 1: you said you're also a caregiver yourself as well to
• 21:33
  Speaker 1: your daughter. Would you like to talk a little bit
• 21:36
  Speaker 1: about your own personal experience of caregiving?
• 21:39
  Speaker 2: Yeah? So, oh my gosh. My daughter's eleven now, and
• 21:44
  Speaker 2: her journey started when she was four days old and
• 21:49
  Speaker 2: we I just she was my second baby, and I
• 21:51
  Speaker 2: just knew something was off, something wasn't right. I just
• 21:54
  Speaker 2: knew it. And so that's really when our journey began,
• 21:59
  Speaker 2: and I ended up having to leave Kauai and we
• 22:03
  Speaker 2: headed to the mainland to find different doctors in different
• 22:07
  Speaker 2: care and we were finally able to get a diagnosis
• 22:10
  Speaker 2: for her. And you know, we fought and fought and
• 22:14
  Speaker 2: fought and fought for a diagnosis and then we finally
• 22:17
  Speaker 2: had one and we were like, oh, my gosh, now
• 22:19
  Speaker 2: what right. So then there's there's that uphill, uphill, uphill
• 22:24
  Speaker 2: battle where you're fighting. You're fighting, and you're fighting, and
• 22:26
  Speaker 2: then you finally reached that point where you finally get
• 22:28
  Speaker 2: a diagnosis and then you're like, oh, your whole world
• 22:33
  Speaker 2: just kind of like everything stops and you're like, well,
• 22:35
  Speaker 2: what do we do now? And so that's when I
• 22:38
  Speaker 2: turned to social media. You know, I was a mom
• 22:42
  Speaker 2: to a two year old who had just been diagnosed,
• 22:45
  Speaker 2: and I had never met anybody with her condition. I
• 22:48
  Speaker 2: you know, I was my son and is like a bull,
• 22:50
  Speaker 2: like he's never been sick. And so I turned to
• 22:53
  Speaker 2: social media and I created a page and the chronic
• 22:58
  Speaker 2: illness community came running at me from every angle. They
• 23:03
  Speaker 2: were lending and helping hand, they were telling you a
• 23:06
  Speaker 2: questions to ask the doctors, where to go, who to see,
• 23:09
  Speaker 2: you know, just everything, and had it not been for
• 23:15
  Speaker 2: my social community, social media community. I'm not sure that
• 23:19
  Speaker 2: iris is healing would have happened so quickly, right, I
• 23:22
  Speaker 2: feel like we would have still been bouncing back and
• 23:24
  Speaker 2: forth to different doctors and trying this medication and trying
• 23:27
  Speaker 2: that medication instead of like belining it to Okay, here's
• 23:31
  Speaker 2: a book of questions that I have for you can
• 23:33
  Speaker 2: answer them, and then where do we start? Right? So
• 23:35
  Speaker 2: I feel like that's that's something that's so invaluable that
• 23:40
  Speaker 2: we can give one another as caregivers and we can
• 23:42
  Speaker 2: give one anothers as patients, like, ok here's my journey's
• 23:47
  Speaker 2: here's how it unfolded for me. Here's what you can
• 23:50
  Speaker 2: take from my experience. Now your experience might not be
• 23:54
  Speaker 2: the same, but here's some questions that you can ask,
• 23:56
  Speaker 2: you know. And so, of course it was very tiring.
• 24:02
  Speaker 2: It is very tiring. Iris has a pronic illness, so
• 24:04
  Speaker 2: it's you know, So it was something that we weren't
• 24:07
  Speaker 2: able to like we got a diagnosis and it's cured.
• 24:09
  Speaker 2: We got a diagnosis, and it was like, okay, how
• 24:11
  Speaker 2: do we manage this? How do we maintain this? And
• 24:14
  Speaker 2: then how do we give her the correct tools in
• 24:17
  Speaker 2: her life to make sure that when she, you know,
• 24:20
  Speaker 2: gets her wings and leaves home, that she's ready to
• 24:24
  Speaker 2: be an adult and care for this chronic illness on
• 24:26
  Speaker 2: her own. I think what's not talked about enough in
• 24:32
  Speaker 2: a caregivers situation is maintaining a household and maintaining a
• 24:37
  Speaker 2: marriage and making sure that all of that is healthy
• 24:40
  Speaker 2: as well. Because when you, from my experience, when you
• 24:45
  Speaker 2: have a child that is so sick, everything stops, and
• 24:49
  Speaker 2: it's you're literally in it, and you're googling all night long,
• 24:53
  Speaker 2: and you're up at three o'clock in the morning. You
• 24:55
  Speaker 2: know web MD, And I know you're not supposed to
• 24:58
  Speaker 2: do that, and I know a lot of people say, oh,
• 24:59
  Speaker 2: I don't do that, but everybody does that, right, And
• 25:02
  Speaker 2: so you're looking for anything. You're looking for the natural ways,
• 25:06
  Speaker 2: you're looking for the holistic ways, you're looking for the
• 25:08
  Speaker 2: western medicine ways, you're looking for shamans and like whatever
• 25:12
  Speaker 2: you can do to fix your situation, right and so,
• 25:16
  Speaker 2: and then you have to wake up in the morning
• 25:18
  Speaker 2: and make sure everybody's ready for school, and you have
• 25:20
  Speaker 2: to make sure, you know, but the house is ready
• 25:22
  Speaker 2: and the house is clean. And so I think there's
• 25:24
  Speaker 2: I think all none of that has talked about enough,
• 25:27
  Speaker 2: like how do you maintain a marriage, how do you
• 25:29
  Speaker 2: keep your marriage happy? How do you keep yourself happy?
• 25:33
  Speaker 2: How do you engage with your other child who is
• 25:36
  Speaker 2: still growing up and living life and has their own
• 25:41
  Speaker 2: just growing up problems, you know, and how do you
• 25:44
  Speaker 2: compartmentalize all of that and make sure that everybody's happy
• 25:47
  Speaker 2: and you're happy, And you know, it's there's a lot
• 25:51
  Speaker 2: to it, like when you're a caregiver, you're not just
• 25:53
  Speaker 2: a caregiver.
• 25:54
  Speaker 1: Yeah, you know, I think you're absolutely right because I
• 25:58
  Speaker 1: speak to some people about just the physical symptoms of stuff.
• 26:03
  Speaker 1: You know, you go to doctors, they prescribe X, Y
• 26:06
  Speaker 1: and Z, and you go through the physical symptoms. But
• 26:09
  Speaker 1: what's not talked about enough is the mental side of it,
• 26:13
  Speaker 1: the emotional side of it. And like you said, it's
• 26:18
  Speaker 1: it's everybody else around, isn't it. It's it's brothers, it's sisters,
• 26:22
  Speaker 1: it's parents, it's grandparents, it's it's everybody else that also
• 26:28
  Speaker 1: needs that sort of support network around them as well.
• 26:35
  Speaker 1: And that's a really really interesting point. There's a really
• 26:38
  Speaker 1: good point to make because I and I find that
• 26:40
  Speaker 1: I think with with all chronic illnesses. That it's that
• 26:48
  Speaker 1: not to say that everybody else will be affected in
• 26:50
  Speaker 1: the same way, but I think too to note that
• 26:54
  Speaker 1: to think actually they might need some extra support here
• 26:58
  Speaker 1: is so so valuable.
• 27:04
  Speaker 2: Yeah, and especially if there's nowhere to turn. I like
• 27:08
  Speaker 2: thinking that if people know about rare patient boys, then
• 27:11
  Speaker 2: they know that I'm sitting behind the screen and they
• 27:15
  Speaker 2: can DM me at any time. You know, it's not
• 27:17
  Speaker 2: my job to give medical advice. I do not ever
• 27:20
  Speaker 2: give any kind of medical advice. I don't, but I'll listen,
• 27:25
  Speaker 2: you know, and I might know a resource like, oh
• 27:27
  Speaker 2: you know what, I know so and so maybe you
• 27:30
  Speaker 2: can reach out to them or be that connection for somebody,
• 27:33
  Speaker 2: because when you're in the thick of it and you
• 27:36
  Speaker 2: feel alone, it is just it's the worst, you know.
• 27:39
  Speaker 2: And if I can be that shoulder for somebody, even
• 27:43
  Speaker 2: for just ten minutes at work through this app, then
• 27:47
  Speaker 2: then I will be there for you to listen and
• 27:50
  Speaker 2: to chat and just say hey, yeah, no.
• 27:53
  Speaker 1: I think that's That's also another reason why I want
• 27:55
  Speaker 1: to do on the show as well, because I think
• 27:56
  Speaker 1: we're very much aligned in that sense that we don't
• 28:00
  Speaker 1: not doctors, we're not nurses. We don't give medical advice.
• 28:03
  Speaker 1: We don't say take this pill, do this exercise, whatever,
• 28:07
  Speaker 1: but we will listen. And sometimes that can be really
• 28:13
  Speaker 1: important for someone just to just to get everything out
• 28:16
  Speaker 1: there because and you probably have it as well, where
• 28:21
  Speaker 1: people will talk to you because they know that you
• 28:24
  Speaker 1: will know a little bit about this condition or whatever
• 28:27
  Speaker 1: it might be. And just talking to somebody who knows,
• 28:31
  Speaker 1: whether you know the ins and outs of their condition
• 28:33
  Speaker 1: or not, but you know what it's like to be
• 28:36
  Speaker 1: a caregiver, to a parent, to a child who has
• 28:39
  Speaker 1: a chronic illness, and to just talk to someone who
• 28:43
  Speaker 1: sort of understands those types of feelings. I think that's
• 28:49
  Speaker 1: that's really important as well.
• 28:52
  Speaker 2: Yeah, so I love to I love to push out
• 28:57
  Speaker 2: as much resources they can on our Instagram. I love
• 29:01
  Speaker 2: to share caregiver stories as well as patient stories. Just
• 29:04
  Speaker 2: you know, I feel like as long as we continue
• 29:06
  Speaker 2: to talk, and as long as we continue to comment
• 29:11
  Speaker 2: and connect, then there's always a common ground somewhere. There's
• 29:15
  Speaker 2: always somewhere for us to go. And you know, we
• 29:19
  Speaker 2: might not be able to sit down physically, but there
• 29:21
  Speaker 2: have been so many people on in our community that
• 29:25
  Speaker 2: have met each other and eventually met in real life
• 29:28
  Speaker 2: just through you know, meeting on our on Rare Patient
• 29:33
  Speaker 2: Voices Instagram, you know, and and then they'll come back
• 29:36
  Speaker 2: and I'll hear these stories, you know, and it just
• 29:39
  Speaker 2: warms my whole entire soul that, like, you know, what
• 29:42
  Speaker 2: I do really does matter. And I love being able
• 29:44
  Speaker 2: to wake up in the morning and being like, Okay,
• 29:46
  Speaker 2: I'm so excited to go to work today. I'm so
• 29:48
  Speaker 2: excited to connect with people. I'm so excited to maybe
• 29:51
  Speaker 2: you know, move this mountain just a little bit, you know,
• 29:54
  Speaker 2: if not for me, then for somebody else, you know. Yeah,
• 29:57
  Speaker 2: very rewarding and and West a wonderful job at Rare
• 30:01
  Speaker 2: Patient Voice, and everybody is extremely committed, and there is empathy,
• 30:06
  Speaker 2: and there's compassion, and there's you know, advocacy, and there's
• 30:11
  Speaker 2: just so much going on. There's so many different parts
• 30:14
  Speaker 2: and we're all in it, you know, and we're all
• 30:17
  Speaker 2: in it, and we're all working for the greater good,
• 30:19
  Speaker 2: and it just it makes sense to do something like this.
• 30:23
  Speaker 1: Yeah, no, and and that kind of goes along with
• 30:26
  Speaker 1: your mission as well on the website, So there's for
• 30:30
  Speaker 1: them for people who don't know that there's there's five
• 30:34
  Speaker 1: five different parts or to five different words and use
• 30:39
  Speaker 1: for the mission integrity, respect, innovation, improvement, and responsibility. And
• 30:46
  Speaker 1: you've kind of explained those really really well. I think
• 30:49
  Speaker 1: they based on what you've said already, they they really
• 30:55
  Speaker 1: encapsulate what Rare Patient Voices is all about. And I
• 31:00
  Speaker 1: think that's I think that's excellent. And I think again,
• 31:04
  Speaker 1: like we said, if somebody just wants to because again
• 31:07
  Speaker 1: some people maybe they don't want to talk down the phone,
• 31:09
  Speaker 1: maybe they don't want to talk via zoo, and they
• 31:12
  Speaker 1: just want to send you a message, and some people
• 31:14
  Speaker 1: are easier to you know, texting or DM or whatever
• 31:17
  Speaker 1: it might be. And sometimes that's a lot easier for
• 31:21
  Speaker 1: people is they know that there's a real person at
• 31:23
  Speaker 1: the end of the phone that they can then DM
• 31:25
  Speaker 1: them back or provide them with somebody else that may
• 31:29
  Speaker 1: be able to help the situation. I think that's that's brilliant.
• 31:34
  Speaker 1: And then just on the Rare Patient Voice itself, if
• 31:37
  Speaker 1: somebody wants to sign up, what do they what would
• 31:42
  Speaker 1: they need to do?
• 31:43
  Speaker 2: It's super easy, super painless. You can do it from home, obviously,
• 31:49
  Speaker 2: but I do believe Tom, you have referral link. So
• 31:52
  Speaker 2: if they have found out about Rare Patient Voice through you.
• 31:56
  Speaker 2: Then they would simply click on your link and when
• 31:59
  Speaker 2: they click on that link, it will take them directly
• 32:02
  Speaker 2: to the sign up portion of our website. They click
• 32:07
  Speaker 2: sign up and they'll go through. It's kind of just
• 32:10
  Speaker 2: like building a Facebook profile or whatever. It's super easy.
• 32:15
  Speaker 2: It's just a profile first name, last name, where you're from,
• 32:20
  Speaker 2: and then you can list all of your conditions. I
• 32:22
  Speaker 2: always encourage people to list all of their conditions because
• 32:27
  Speaker 2: it gives you more of an opportunity to participate in
• 32:31
  Speaker 2: our studies. For instance, Crone's disease have is an umbrella
• 32:36
  Speaker 2: of many conditions, right, so list all of those conditions.
• 32:41
  Speaker 2: With Crone's disease. You can have ra you can have EOE,
• 32:44
  Speaker 2: you can have exema, you can have food allergies. You know,
• 32:46
  Speaker 2: so list all of those if you're diagnosed with those,
• 32:50
  Speaker 2: and that's really it. So it takes about it can
• 32:53
  Speaker 2: take anywhere between like a week to two weeks to
• 32:57
  Speaker 2: get verified on our end, because once you're signed up,
• 33:00
  Speaker 2: your sign up comes to our desk and then we
• 33:03
  Speaker 2: just go through verify it all, make sure that it's okay,
• 33:05
  Speaker 2: and then you'll get a confirmation email. From us. Once
• 33:08
  Speaker 2: you get that confirmation email, you can go into your
• 33:12
  Speaker 2: dashboard at any time. You can add conditions, you can
• 33:16
  Speaker 2: take conditions off, you can add medications, take medications off,
• 33:21
  Speaker 2: and that's it. Once your profile is created, we have
• 33:24
  Speaker 2: that safe and secured and we'll reach out to you
• 33:28
  Speaker 2: via email anytime a study comes through our desk that
• 33:31
  Speaker 2: matches the conditions that you have on your profile.
• 33:34
  Speaker 1: Easy, that easy.
• 33:37
  Speaker 2: Well, if you don't use Tom's referral link, which you
• 33:40
  Speaker 2: should totally use Tom's referral link, you can just sign
• 33:44
  Speaker 2: up through the website as well.
• 33:45
  Speaker 1: But don't do that, use my referral link to use
• 33:48
  Speaker 1: some Well, this has been excellent. Thank you so so
• 33:54
  Speaker 1: much for coming on and explaining again rare pace your
• 33:57
  Speaker 1: voices was something that before I starts Instagram, didn't know existed.
• 34:01
  Speaker 1: So I'm really really glad that I now know about
• 34:05
  Speaker 1: it and I know just how many people you help
• 34:08
  Speaker 1: and all across the world, which is brilliant. And I
• 34:13
  Speaker 1: know we've talked about how people sign up, but if
• 34:15
  Speaker 1: people want to follow the Instagram account, keep up to
• 34:19
  Speaker 1: date with everything on the website, how do they how
• 34:22
  Speaker 1: do they do that?
• 34:23
  Speaker 2: So we are on all social media platforms. We've got TikTok,
• 34:28
  Speaker 2: which is tough, but I do TikTok.
• 34:31
  Speaker 1: I don't understand TikTok. I've got it, but I I
• 34:33
  Speaker 1: just I feel like I'm too old.
• 34:37
  Speaker 2: Yeah, the same way, but I sorry to be relevant
• 34:40
  Speaker 2: and I still try to post because that's what I do.
• 34:43
  Speaker 2: We're on TikTok, Facebook, all of you know, Pinterest, everything,
• 34:46
  Speaker 2: We're on all the social media platforms at Rear Patient Voice,
• 34:50
  Speaker 2: and you know, I want to throw this out there
• 34:52
  Speaker 2: really quick too. We I love to do if you'd
• 34:55
  Speaker 2: love to share your story, I do what's called a
• 34:58
  Speaker 2: Weekly Warrior every week. It's kind of taken the hiatus
• 35:02
  Speaker 2: for the past few months just because I've been super busy,
• 35:05
  Speaker 2: but I want to bring that back because it is
• 35:08
  Speaker 2: it's such a great part of our Instagram to If
• 35:11
  Speaker 2: any of your listeners would like to share their story,
• 35:14
  Speaker 2: please reach out to me. I would love to introduce
• 35:17
  Speaker 2: you to our community. You can do that through a video. Obviously,
• 35:21
  Speaker 2: reels have a bigger push on social media, but if
• 35:25
  Speaker 2: you're not comfortable with creating a video all about you,
• 35:28
  Speaker 2: you can send a picture of yourself to me with
• 35:31
  Speaker 2: a short bio and I'd love to introduce you to
• 35:33
  Speaker 2: our community, so you can reach out to me through
• 35:36
  Speaker 2: any of our social media platforms. I am always the
• 35:40
  Speaker 2: face behind Instagram and TikTok. If you reach out through Facebook,
• 35:43
  Speaker 2: it is my colleague, Brooklyn, and she is just as
• 35:46
  Speaker 2: sweet as they come. But so I would love to
• 35:51
  Speaker 2: push out to Weekly Warriors. You can reach out to me.
• 35:57
  Speaker 1: I'm starting to backput all.
• 35:58
  Speaker 2: I don't know why social media. Follow us on social media,
• 36:01
  Speaker 2: Weekly Warriors. If you'd like to become a referral partner
• 36:04
  Speaker 2: as well, reach out to me and we can make
• 36:06
  Speaker 2: that happen.
• 36:08
  Speaker 1: And yeah, fantastic. And the website as well is rare.
• 36:13
  Speaker 2: Patient Voice dot com. Everything is just at Rare Patient Voice,
• 36:18
  Speaker 2: so if you take that in you'll find us brilliant.
• 36:22
  Speaker 1: Well, thank you. This has been excellent, so thank you
• 36:24
  Speaker 1: so so much for coming on and obviously with you,
• 36:27
  Speaker 1: wish you the very best with Rare Patient Voices in
• 36:30
  Speaker 1: the future.
• 36:31
  Speaker 2: You so much done. I appreciate being here.
• 36:36
  Speaker 1: Thank you for listening and being part of this growing community.
• 36:39
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 36:42
  Speaker 1: leave a review and share it with someone who might
• 36:45
  Speaker 1: need it. You can connect with us on social media
• 36:48
  Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's podcast.
• 36:53
  Speaker 1: See you next week.