Speaker 1: As this limp was developing and you're in high school.
Speaker 1: Never in your thoughts are you thinking I must have
Speaker 1: a disease or disability I didn't know about. I know
Speaker 1: there's going to be a lot of struggle and things
Speaker 1: are going to get worse. But you have to be resistant.
Speaker 1: You have to be willing to fight, you have to
Speaker 1: be willing to push past your means in order to
Speaker 1: live a quote unquote normal life. There's no magic pill
Speaker 1: that you can take. You know, that's terrifying. It was
Speaker 1: kind of really dark time. It was just like, well,
Speaker 1: what do I do? What is you know, what's happening?
Speaker 1: You're feeling like your life is over? How terrifying would
Speaker 1: it be to fight an unknown enemy, one you didn't
Speaker 1: recognize and didn't see coming. What if that enemy was
Speaker 1: coming from within a disease even doctors couldn't identify. Nearly
Speaker 1: half of all Americans suffer from some chronic illness, and
Speaker 1: many struggle for an accurate diagnosis. These are their stories. A.
Speaker 1: Lauren Bright the checko and this is symptomatic. When you
Speaker 1: meet cam Redloss, you immediately notice her pink hare and
Speaker 1: then as you talk to her, you quickly notice that
Speaker 1: she has a fiery and creative energy to match. So
Speaker 1: I'm actually a self taught illustrator and all of my
Speaker 1: drawings are related to moments inspired by my rare debilitating
Speaker 1: condition that it just kind of took on a life
Speaker 1: of its own. Cam has gained a following for her
Speaker 1: emotionally evocative illustrations, which reflect her long, arduous journey to
Speaker 1: find a diagnosis and learn how to live with an
Speaker 1: elusive disease that has altered the course of her life.
Speaker 1: One of the things that she's really good at, and
Speaker 1: I don't even know if she does it purposely, is
Speaker 1: the fact that she's so open and vulnerable about herself.
Speaker 1: You know, most people shy away from wanting to be
Speaker 1: too honest or show their insecurities or even faults, and
Speaker 1: Cams like, you know what, you know, I can't really
Speaker 1: avoid people seeing my insecurities a certain extent, and so
Speaker 1: I might as well just be open about it and
Speaker 1: talk about it myself and let people into the conversation.
Speaker 1: That is her husband Jason, who first met Cam when
Speaker 1: they were in design school in Michigan. But Cam's symptomatic
Speaker 1: journey started long before then. So I'm a Korean American
Speaker 1: adoptee and I was abandoned at birth. I was born
Speaker 1: with a cleft palette. I also had a deadly livery
Speaker 1: disease and chicken pox. I had measles and this is
Speaker 1: all in the first four months without a mother or
Speaker 1: parents whatever. Um. I was told to abandoned me right
Speaker 1: at the maternity clinic and I spent four years in
Speaker 1: an orphanage until an American family and Michigan adopted me.
Speaker 1: I have three brothers. I always say they were homemade.
Speaker 1: I was imported. It was a very typical Midwest upbringing.
Speaker 1: Cam grew up in a pretty competitive soccer household, where
Speaker 1: her father once played and brothers were eager to follow
Speaker 1: in his cleats. Cam showed impressive talent on the field
Speaker 1: to moving easily to varsity level as a high school junior.
Speaker 1: Soccer is a huge part of my life. I played
Speaker 1: the thirteen years and then when I got divarsity soccer,
Speaker 1: I was just noticing I was running slower. I would
Speaker 1: kick and it was such a disconnect with my mind
Speaker 1: and my body and there would be such a delay
Speaker 1: and I'm like, what is going on here? I am
Speaker 1: on the virsity soccer team and I felt like I
Speaker 1: was just embarrassing. I'm like, what's going on? I can't
Speaker 1: I am not myself. What did you think was happening
Speaker 1: at the time, because you must have been gas lighting
Speaker 1: yourself to a certain degree. Well, I agreed with that
Speaker 1: that I thought, well, it's me. It's easy to be
Speaker 1: very self critical, and it was just another reason to
Speaker 1: be done on myself and it was just a lot
Speaker 1: of self loathing. It was a very difficult time because
Speaker 1: I thought it was my fault. So when I look
Speaker 1: back at that time, I just remember all these issues
Speaker 1: that I had that I didn't know was something, and
Speaker 1: instead I blamed myself. But this wasn't her fault. It
Speaker 1: wasn't something she could just work through with some extra
Speaker 1: practice session or drills. And little did sixteen year old
Speaker 1: cam No, these were the first symptoms of a disease
Speaker 1: that was about to rapidly change the course of her life.
Speaker 1: Like a year later, I just kept complaining about it.
Speaker 1: My room was done in the basement, and so running
Speaker 1: up and down the stairs is a very normal thing
Speaker 1: for me to do, and then suddenly it became really difficult.
Speaker 1: I just couldn't. I would try to run up the
Speaker 1: stairs and I was like tired by the time I
Speaker 1: got to the top, and I was like, well, that's strange. Also,
Speaker 1: a gate or a limp started developing. I was thinking,
Speaker 1: that's just weird. Am I so lazy or auto shape
Speaker 1: that I can't even get my ankle to move? So
Speaker 1: I did start telling my parents I think there's something wrong,
Speaker 1: something's going on, And there was still that hesitance of like, okay,
Speaker 1: I'm you just not trying hard enough. So we went
Speaker 1: to the family doctor and pretty much he said he
Speaker 1: thinks one leg is shorter than the other. So for
Speaker 1: about two years I wore she lift. Nothing was changing,
Speaker 1: it was just getting worse. And I would tell my parents, hey,
Speaker 1: this is not getting better, it's actually worse, and this
Speaker 1: she lift is kind of hurting. Um. The response will
Speaker 1: be it's because you're not wearing it. And as it
Speaker 1: got worse than it became obvious like there's something going
Speaker 1: on here. From delayed reaction time quickly turning into drop
Speaker 1: foot as Cam struggled to understand the events, the mysterious
Speaker 1: deterioration of her mobile city was only just beginning. That
Speaker 1: must have been such a painful period sixteen seventeen and
Speaker 1: eighteen where you're trying to draw attention to something you
Speaker 1: don't understand, and then you're blamed for the symptoms. Yes,
Speaker 1: that was very difficult, and honestly it's more difficult in hindsight.
Speaker 1: I think that's something that a lot of us could
Speaker 1: potentially do, maybe to our child if our mind isn't there.
Speaker 1: We don't want to ever go there and consider that
Speaker 1: it could be a health thing. But now that I
Speaker 1: know what was wrong, I do feel a little bit
Speaker 1: of sadness for the young teenage cam who kind of
Speaker 1: just had to go through it alone. You know, you're
Speaker 1: in high school and you just feel like, you know,
Speaker 1: all my senior friends are playing soccer and I'm the
Speaker 1: leader who didn't make the team. And again, never in
Speaker 1: your thoughts are you thinking I must have a disease
Speaker 1: or disability I didn't know about. But contrary to the challenges,
Speaker 1: Ken never let what was happening to her physically getting
Speaker 1: the way of her goals, a theme she'll carry through
Speaker 1: her entire journey. She pushed through her first misdiagnosis and
Speaker 1: set her sights on studying industrial design in college, and
Speaker 1: as her symptoms worsened, she pushed even harder for answers.
Speaker 1: So I started seeing specialists because I felt like there's
Speaker 1: something neurology related. And again I know nothing about medical
Speaker 1: but what I found throughout the entire process is, Wow,
Speaker 1: there's no one that is going to help me. They
Speaker 1: all just gaslight me or give me pills that aren't
Speaker 1: helping me and making it worse. I didn't anticipate such
Speaker 1: a long journey of trying to figure out what was
Speaker 1: happening to my body, and pretty much every specialist was
Speaker 1: the same. I would go, they would do some tests,
Speaker 1: and they were all about the same area of diagnosis
Speaker 1: around my disease, but it wasn't the diagnosis. So one
Speaker 1: was like limon girdle, muscludish defy, one was facio scapular moscutif.
Speaker 1: One was dematomissitis. While Cam was diligently searching for answers
Speaker 1: and also working through a grueling industrial design program, she
Speaker 1: met Jason, who was in the illustration program at the
Speaker 1: same school. I just saw her. I was like, Wow,
Speaker 1: who's that and she looks super cute. She jokes that
Speaker 1: I stalked her, but when I figured out that she
Speaker 1: was in the industrial design program, I would kind of
Speaker 1: make my way over to their every once in a
Speaker 1: while kind of check things out, just to see if
Speaker 1: she was around. They instantly became friends, but she made
Speaker 1: it clear they were just friends for now. So do
Speaker 1: you remember how she opened up to you? How did
Speaker 1: her health struggles come up in conversation? You know, we
Speaker 1: probably talked about it very casually and very lightly. I
Speaker 1: didn't want to just bring it up and be like, hey, like,
Speaker 1: why are you walking with a cane? She brought it
Speaker 1: up at some point where we're hanging out, and uh,
Speaker 1: she explained to me a little bit more about the
Speaker 1: story honestly than the prognosis, because she didn't actually know
Speaker 1: for sure what she had at that time. But you
Speaker 1: kind of explained that, yeah, she had been sticking answer
Speaker 1: for a long time now. Using leg braces and a
Speaker 1: cane on a daily basis, Cam was able to get around,
Speaker 1: but it seemed to become more difficult by the month.
Speaker 1: Feeling that pressure without a proper treatment, Cam felt more
Speaker 1: emboldened to move on to the next doctor to try
Speaker 1: a different approach to figuring out what was wrong. So
Speaker 1: I had about six different diagnoses. Two of the diagnosis
Speaker 1: I had early on limb girl on muscaro distro feat
Speaker 1: and polymositas. Those seem like just by based on the symptoms,
Speaker 1: that those could be it. But obviously after a while
Speaker 1: living in and taking the medication, it was just a
Speaker 1: feeling like, I don't think those are it. On top
Speaker 1: of the frustration and mental toll it was taking on
Speaker 1: her to constantly feel an answer was always eluding her.
Speaker 1: It was increasingly difficult for Cam to even get herself
Speaker 1: to these appointments on her own, but she was determined
Speaker 1: to find an answer because she held onto the hope
Speaker 1: that if she did, her mobility could be restored. So
Speaker 1: there was an urgency for you to get a diagnosis,
Speaker 1: because did you think that if you got the right
Speaker 1: diagnosis you could reset things, that there would be a cure. Well, yeah,
Speaker 1: any kind of treatment, and the answer is always better
Speaker 1: than the unknown, even if it's a terrible answer, at
Speaker 1: least as an answer, because then you don't feel crazy
Speaker 1: or you don't feel so alone. So it's really the
Speaker 1: answer that you're looking for. Not ever realizing it could
Speaker 1: be this significant and this life altering, I just thought, well,
Speaker 1: there's something, and they'll give me some medicine and I'll
Speaker 1: be fine. Desperate to find the potential treatment that could
Speaker 1: slow or even reverse the loss of her mobility. Cam
Speaker 1: hit an emotional wall when a neurologist took eight months
Speaker 1: to give her the results of a biopsy, despite her sir,
Speaker 1: though she sympathizes with her doctors. And so I'd have
Speaker 1: to drag my disabled body using a cane and leg
Speaker 1: braces into this hospital center and they would tell me, oh,
Speaker 1: we don't have your results yet, and this is eight
Speaker 1: months later, and then I would go back in again
Speaker 1: and they would say we don't have your results. And
Speaker 1: I was thinking, like, what is going on? And I
Speaker 1: just finally said, you know how difficult it is for
Speaker 1: me to come in here. Why wouldn't you guys tell
Speaker 1: me that you don't have them and make me come
Speaker 1: into an appointment the lead neurologist, he basically said, And
Speaker 1: I was getting cheery, and he knew my parents are
Speaker 1: going through divorce at the time, and you know, college
Speaker 1: is very difficult, and he basically said, oh, I'm sorry.
Speaker 1: Is it because your parents are getting a divorce? Do
Speaker 1: you need some medication for that? And I get it.
Speaker 1: I have sympathy for doctors. I get that they're getting
Speaker 1: a lot of non specialists coming and telling them what
Speaker 1: they think is wrong. But there is also something to
Speaker 1: that where the person does know their body the most
Speaker 1: and got the most and involved to try to solve it.
Speaker 1: Cam was on an emotional pendulum, swinging from determination to
Speaker 1: loneliness and back again. After five diagnoses that never seemed
Speaker 1: to fit and traveling all over Michigan trying to find
Speaker 1: an answer, Cam had an idea and a glimmer of
Speaker 1: hope to go to the best hospital in the country
Speaker 1: for rare diseases, the Mayo Clinic. It's so weird looking
Speaker 1: back on it, but when you're in it, all these
Speaker 1: things aren't adding up. It only adds up in hindsight.
Speaker 1: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 1: Now back to Symptomatic, a Medical Mystery Podcast. Cam had
Speaker 1: been a rising soccer star in high school when some
Speaker 1: mysterious illness started targeting her legs, taking away her mobility
Speaker 1: piece by piece while juggling assignments in a grueling design program.
Speaker 1: As a very independent young adult, she went on a
Speaker 1: mission to try to find answers as to what had
Speaker 1: been ailing her. When you're in it, all these things
Speaker 1: aren't adding up. It only adds up in hindsight, But
Speaker 1: you know, at the time, you're just like, I don't know.
Speaker 1: I'm trying to finish college. I know there's some kind
Speaker 1: of disability or something going on here. So that was
Speaker 1: very important for me to finish college, and so I
Speaker 1: was very hyper focused on making sure I get my
Speaker 1: degree while I'm trying to figure out my diagnoses. But
Speaker 1: now she had a new possibility for hope of the diagnosis.
Speaker 1: She was traveling to the Mayo Clinic to see the
Speaker 1: best doctors in the country. So I flew there actually
Speaker 1: by myself. Um, which is really difficult looking back. How
Speaker 1: old are you at this point? I mean I was
Speaker 1: old enough. I was sobaly like twenty four, but it
Speaker 1: didn't actually bother them, and it doesn't old like um
Speaker 1: more so as an older person just thinking back on it.
Speaker 1: Cam was at the Mayo Clinic for almost a week,
Speaker 1: going through a gauntlet of tests trying to get to
Speaker 1: the root of the issue. But she only had to
Speaker 1: wait two weeks to get a phone call that would
Speaker 1: change her life. I was in my parents kitchen on
Speaker 1: the phone the Wins with chords. They said, you have
Speaker 1: Genie myopathy, and I was like, Okay, well, what do
Speaker 1: I do with that? How do I even know I
Speaker 1: still have this? Because I had just gotten five different
Speaker 1: incorrect diagnoses. Though Cam had reservations at the time, the
Speaker 1: diagnosis was correct. She finally had an answer to what
Speaker 1: had been slowly taking her mobility from her since she
Speaker 1: was a teenager. Genny myopathy. It's a hereditary muscle disorder
Speaker 1: that starts when you're born, but the actual symptoms don't
Speaker 1: start until usually your teens or twenties early adulthood. Often
Speaker 1: start with weakness in distal muscles distal meaning towards your
Speaker 1: hands and feet, so often a foot drop where you
Speaker 1: can't lift your feet up at the ankles, and then
Speaker 1: progresses slowly throughout the body and your skeletal muscles in
Speaker 1: your limbs, and over the next ten to twenty years,
Speaker 1: patients may lose the ability to walk and may have
Speaker 1: to rely on a wheelchair. They may have trouble with
Speaker 1: breathing in less common cases, but it is slowly progressive.
Speaker 1: That was Dr Minichia Corp, an Assistant professor a neuromuscular
Speaker 1: specialist at UC Irvine. She's also the doctor currently overseeing
Speaker 1: Cam's care. Cam struggled for years to get answers to
Speaker 1: what was happening to her. Is that uncommon with Jenny myopathy. No,
Speaker 1: it's very common to not have a diagnosis for a
Speaker 1: long time, especially in the days before, maybe five years ago,
Speaker 1: where genetic testing became more readily available and much cheaper.
Speaker 1: So now we can diagnose it pretty fast. I mean,
Speaker 1: I would say, as soon as someone came to a
Speaker 1: ner muscular special lit's clinic, we could do a genetic
Speaker 1: panel and find out within a few weeks. But before that,
Speaker 1: I mean when she was being worked up in the
Speaker 1: early two thousands, genetic testing wasn't readily available, and so she,
Speaker 1: for example, went through multiple muscle biopsies, and they could
Speaker 1: tell there was obviously some kind of muscular dystrophy going on,
Speaker 1: but to nail down exactly what type was a much
Speaker 1: longer process. Cam was now equipped with the knowledge of
Speaker 1: what had been attacking her. It now had a name,
Speaker 1: but coming to terms with her options hope of finding
Speaker 1: a cure and gaining back the mobility she had already
Speaker 1: lost was a battle of its own. When I'm reading
Speaker 1: the prognosis of this disease, I really don't know what
Speaker 1: to think. Because it's telling me, Okay, you're gonna not
Speaker 1: be able to walk, You're going to go into a
Speaker 1: wheelchair and complete immobility. And it's not like I didn't
Speaker 1: believe it, but you look at it and you're like, wait,
Speaker 1: I'm going to not be able to move in the future.
Speaker 1: It's like maybe your mind does some tricks and doesn't
Speaker 1: want to accept that, but you don't know what that
Speaker 1: means until it starts happening. I read it, I knew
Speaker 1: what was going to happen. But as I've gone through
Speaker 1: these stages of the disease and progressing and different mile
Speaker 1: stones in my body, I've realized how little you can
Speaker 1: truly understand textbook jargon of what's going to happen to you.
Speaker 1: And that's something that has couraged the way I share,
Speaker 1: where I make it more personal, because you don't realize
Speaker 1: that when you eat. Even the person that's experiencing it
Speaker 1: struggling to wrap her head around a prognosis that says
Speaker 1: her muscles will slowly deteriorate until she loses all of
Speaker 1: her motor skills. She goes from feeling alone on her
Speaker 1: journey for a diagnosis into a deeper pit of despair
Speaker 1: after having one. It was kind of really dark time.
Speaker 1: It's something that I've recently shared on my Instagram over
Speaker 1: the summer, very lightly. I mentioned that I was serious.
Speaker 1: Idal it was just like, well what do I do?
Speaker 1: What is? You know? What's happening? Um? And there's an
Speaker 1: element of your feeling like your life is over because
Speaker 1: there's this association with disabilities that it's not a life
Speaker 1: worth living, which now is a disability advocate for over
Speaker 1: twenty years, I realized that's a very harmful and incorrect assessment.
Speaker 1: But you know, you don't know that as a child,
Speaker 1: when I looked at someone disabled, you just view it
Speaker 1: as something like, that's so unfortunate. And so we've been
Speaker 1: riddled with all of these narratives of disability and disabled life,
Speaker 1: of that it's not worth living. While still struggling to
Speaker 1: reconcile what her future will be like with her life's
Speaker 1: goals and ambitions, Kim goes back to the physician whose
Speaker 1: dispiriting advice gave Cam the push she needed to take
Speaker 1: back the reins. Then I went to my sociatrists and
Speaker 1: he said, oh, I have heard of that. It's extremely rare.
Speaker 1: My suggestion to you is you should quit college, immediately,
Speaker 1: get a less ambitious job, maybe a secretary, and just
Speaker 1: get ready for a life of like basically nothing. So
Speaker 1: the doctor basically told you you're up against insurmountable odds.
Speaker 1: Your best strategy at this point is just give up. Yes,
Speaker 1: that is exactly what he said, which is really shocking.
Speaker 1: Instead of internalizing her diagnosis is something that would restrict
Speaker 1: her life, she took it as a reason to take
Speaker 1: advantage of every single day from that moment on. Cam's
Speaker 1: attitude from that respect has always been a benefit to
Speaker 1: her because Cam has a very resistant, resilient kind of personality,
Speaker 1: meaning if you tell her she can't do something, she's
Speaker 1: going to say, oh, yeah, I can. And so that
Speaker 1: was pretty much what happened as she said, well, yeah,
Speaker 1: I am going to finish school and I am going
Speaker 1: to have a career, and largely that's what she did.
Speaker 1: I just felt like that diagnosis put a lot of
Speaker 1: time moment in my life suddenly, and that's probably what
Speaker 1: catapulted or the origin of my philosophy of really living
Speaker 1: in a lot. I came from Cam immediately went on
Speaker 1: a soul searching journey to Korea. It was the first
Speaker 1: time that she had visited her place of birth, even
Speaker 1: going back to the orphanage she lived in until she
Speaker 1: was four. The trip restored her, It invigorated her, It
Speaker 1: reshaped her perspective on her future. I booked ticket, I
Speaker 1: left two weeks later, and I think that really helped
Speaker 1: change my thinking. It's not that it wasn't still difficult,
Speaker 1: but it just realizing that there was a lot to
Speaker 1: live for. There's a lot of life out there, and
Speaker 1: there's a lot of things that I want to do,
Speaker 1: and I think I subconstiantly made a decision that I
Speaker 1: was going to live my life as fully as I could.
Speaker 1: Before immobility happened, Cam was still slowly losing control of
Speaker 1: her legs when she returned to Michigan from her trip.
Speaker 1: She quickly realized she needed to live somewhere warmer to
Speaker 1: make her lifestyle easier. Michigan is a lot of winters,
Speaker 1: and what would happen is I'd fallen the ice outside
Speaker 1: my door and just be laying there looking up at
Speaker 1: you know, the dar guy, And I thought, I need
Speaker 1: to get out of here. I need to go to
Speaker 1: warm estate because I know I'm going to get more disabled.
Speaker 1: And I decided to move to California. Out of the blue,
Speaker 1: Jason called and he said, Oh, I'm in California right now.
Speaker 1: If you want to come stay with my roommate and
Speaker 1: I while you look for a job, that's perfectly fine.
Speaker 1: And so that's how it started. It's kind of funny
Speaker 1: because I joked that when she came out here, I
Speaker 1: was like, oh, yeah, you're looking for work, I can
Speaker 1: you can stay with me in my roommates. But it
Speaker 1: was secretly entrapment in the beginning stages and coming into California,
Speaker 1: it was a little nervous, like I didn't technically know
Speaker 1: Jason super well. We're friends, but you know, I'm going
Speaker 1: to go live with them, and I'm having much difficult
Speaker 1: time getting around and it didn't have a job, so
Speaker 1: it was a little scary, but it worked out. I
Speaker 1: got a job. I started working at Mattel and you know,
Speaker 1: my whole life in California began. After her diagnosis, Cam
Speaker 1: was determined to dictate her in dependence and success. She
Speaker 1: started traveling more, moved to California to pursue her design career,
Speaker 1: and discovered the world of disability advocacy. Cam learned to
Speaker 1: share her story and awareness the best way she knew
Speaker 1: how through her design and her art. Sometimes, though, you know,
Speaker 1: get emotional and cry or something like when I was
Speaker 1: drawing the piece that was signifying my beginnings of going
Speaker 1: into a wheelchair, you know, stuff like that, is that
Speaker 1: you're really working that out, So it is a form
Speaker 1: of therapy for yourself. They say, picture's it worth a
Speaker 1: thousand words, And I think Cam really maximized that ability
Speaker 1: to the fullest extent. But yeah, she still gets recognized
Speaker 1: to this day for her arts, and I still see
Speaker 1: comments on our posts and social media just saying like, yeah,
Speaker 1: that's exactly what I'm experiencing, what I'm feeling, or I
Speaker 1: never even thought of the think of it that way.
Speaker 1: Cam uses her art to process and reflect on her journey.
Speaker 1: Her art is beautiful and emotionally evocative, so much so
Speaker 1: that she's gained a significant following community which resonates with
Speaker 1: the new experience of Cam's story, including Dr Corb. One
Speaker 1: of the other ones that caught my eye when I
Speaker 1: was looking through her gallery this week was one where
Speaker 1: she's kind of behind these bars. She's more of like
Speaker 1: the head and she's using puppet strings to manipulate her
Speaker 1: limbs which are just disembodied, you know, legs and arms
Speaker 1: that are kind of in the foreground of the picture,
Speaker 1: and it says in another place in the land, far away,
Speaker 1: she was able to move her limbs just with the
Speaker 1: pull off a string, and I thought that was really
Speaker 1: powerful way of looking at it. And it's hard for us,
Speaker 1: if we're not affected with those symptoms, to understand what
Speaker 1: it feels like for them on that side. I have
Speaker 1: seen those comments as well in social media that other
Speaker 1: people pick up and it's like, Hey, this is possible.
Speaker 1: I don't have to withhold this from myself. I can't
Speaker 1: do this. Cam's openness to share her story with other
Speaker 1: people through both her art and her warm spirit, has
Speaker 1: led her to become a speaker for different advocacy groups
Speaker 1: around the world, in particular g n E myopathy patient groups.
Speaker 1: There's patients in Japan as well. They had heard about
Speaker 1: Kim and so they had invited her over to kind
Speaker 1: of consult her on how to start a patient advocate group.
Speaker 1: So we went over and we talked with them and
Speaker 1: we had a great time, and they showed us around
Speaker 1: and I was like, what better time than now to uh,
Speaker 1: you know, do something unique and proposed to her. Buoyed
Speaker 1: by Jason's unwavering support and the hopes that sharing her
Speaker 1: story might help others navigating their own struggles, Km's outlets
Speaker 1: through art and advocacy address the visceral reality of living
Speaker 1: at the mercy of her condition. Jason and Cam are
Speaker 1: now working through how to live with the constantly changing
Speaker 1: nature of g n E myopathy. I'm an artist. I
Speaker 1: need my hands. So that's kind of been illuming shadow
Speaker 1: that Okay, this is another thing I'm gonna lose. Wow.
Speaker 1: So the grieving process has become something that you've had
Speaker 1: to look at as almost a marathon. Yes, it feels
Speaker 1: like it never ends, and you get adjusted to one
Speaker 1: stage and then another one comes up. You're like, Okay,
Speaker 1: I can deal with this level of progression. For me
Speaker 1: at the stage, it's the same thing I say every year.
Speaker 1: If it could just stop right here, I'd be I'd
Speaker 1: be fine with it. I don't mind being disabled. I'm
Speaker 1: very used to it now and I think it's brought
Speaker 1: a lot of perspective an interesting way of living. But
Speaker 1: I'm constantly like I just wish it would stop right here.
Speaker 1: I wish it would stop taking more, because that's the
Speaker 1: difficulty is once you adjust to a new level, then
Speaker 1: another loss happens, so you have to go through the
Speaker 1: whole process of good. I think when we learned about it,
Speaker 1: like what the full diagnosis was, and you hear the
Speaker 1: words like complete immobility, like you have an idea what
Speaker 1: that means. It's kind of an abstract concept at that time.
Speaker 1: My initial reaction was like, oh, like, oh my god,
Speaker 1: and then I felt really bad ad for what Cam
Speaker 1: was going to have to go up against. There's a
Speaker 1: lot of negatively associated with it, but my initial reaction
Speaker 1: was because we have been together for a while and
Speaker 1: I was invested. It was like, well, it's terrible, but
Speaker 1: I'm glad that I'll be able to at least be
Speaker 1: able to be here for him. Cam has been on
Speaker 1: a long, arduous journey to understand what was happening to her,
Speaker 1: fighting against misdiagnoses and internal gas lighting while feeling herself
Speaker 1: slowly lose control of her body. Cam's experience has only
Speaker 1: reinforced her fortitude to take advantage of the opportunity she
Speaker 1: has in her life, countering her loss of mobility with
Speaker 1: creativity and purpose. So even though I'm sure she feels
Speaker 1: trapped in her body, She's not letting that stop her.
Speaker 1: She's still active with multiple creative outlets in terms of
Speaker 1: her writing and her art, and you know, speaking out
Speaker 1: for others to be able to find their diagnosis faster,
Speaker 1: you know, with less inconvenience. I think that's incredible. The
Speaker 1: word heroic is usually applied to these superhero type characters
Speaker 1: who are invulnerable it can do anything, but like, that's
Speaker 1: not heroic if you're vulnerable, right, Like being heroic is
Speaker 1: someone who is vulnerable, someone who can be hurts, whether
Speaker 1: physically or emotionally. I remember how difficult it was when
Speaker 1: I was alone going through this, and what I've realized
Speaker 1: through like fifteen years of advocacy is everyone just wants
Speaker 1: to feel seen, they want to feel validated. It's very
Speaker 1: awarding that people can feel a little bit more whole
Speaker 1: or connected just through the aspect of someone else sharing
Speaker 1: their story. And that's all I'm doing, is sharing my story.
Speaker 1: For more information on g n E myopathy, go to
Speaker 1: Cure g n E m dot org or check out
Speaker 1: the first ever g N E myopathy Clinic at U
Speaker 1: c Irvine's Neuromuscular Center, led by one of Dr corbess colleagues.
Speaker 1: My name is Camrad Lusk, and it took me about
Speaker 1: eight years to find a diagnosis for gn E myopathy.
Speaker 1: On the season finale of Symptomatic, August has been suffering
Speaker 1: since the age of five, with symptoms which include inexplicable
Speaker 1: sores and excruciating pain. You've been in so much pain
Speaker 1: that you're like, Wow, I'm screaming, but it's not helping.
Speaker 1: Perhaps I should stop screaming because it's not helping. What
Speaker 1: can I do? What can I do? There's nothing I
Speaker 1: can do. He goes on a search for diagnosis that,
Speaker 1: even once found, continues to provide daunting medical challenges. Symptomatic
Speaker 1: a Medical Mystery podcast is an original podcast from I
Speaker 1: Heart Radio. Are shows hosted by me Lauren Bright Pacheco.
Speaker 1: Executive producers are Matt Romano and myself. Our EP of
Speaker 1: post production is James Foster. Our producers are cra Kaiser
Speaker 1: and John Irwin.