Case #07: Kam

kind of really dark time. It was just like, well, what do I do? What is you know, what's happening? You're feeling like your life is over? How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming. What if that enemy was coming from within a disease even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories. A.

Lauren Bright the checko and this is symptomatic. When you meet cam Redloss, you immediately notice her pink hare and then as you talk to her, you quickly notice that she has a fiery and creative energy to match. So I'm actually a self taught illustrator and all of my drawings are related to moments inspired by my rare debilitating condition that it just kind of took on a life

of its own. Cam has gained a following for her emotionally evocative illustrations, which reflect her long, arduous journey to find a diagnosis and learn how to live with an elusive disease that has altered the course of her life. One of the things that she's really good at, and I don't even know if she does it purposely, is the fact that she's so open and vulnerable about herself.

You know, most people shy away from wanting to be too honest or show their insecurities or even faults, and Cams like, you know what, you know, I can't really avoid people seeing my insecurities a certain extent, and so I might as well just be open about it and talk about it myself and let people into the conversation. That is her husband Jason, who first met Cam when they were in design school in Michigan. But Cam's symptomatic journey started long before then. So I'm a Korean American

adoptee and I was abandoned at birth. I was born with a cleft palette. I also had a deadly livery disease and chicken pox. I had measles and this is all in the first four months without a mother or parents whatever. Um. I was told to abandoned me right at the maternity clinic and I spent four years in an orphanage until an American family and Michigan adopted me. I have three brothers. I always say they were homemade. I was imported. It was a very typical Midwest upbringing.

Cam grew up in a pretty competitive soccer household, where her father once played and brothers were eager to follow in his cleats. Cam showed impressive talent on the field to moving easily to varsity level as a high school junior. Soccer is a huge part of my life. I played the thirteen years and then when I got divarsity soccer, I was just noticing I was running slower. I would kick and it was such a disconnect with my mind and my body and there would be such a delay

and I'm like, what is going on here? I am on the virsity soccer team and I felt like I was just embarrassing. I'm like, what's going on? I can't I am not myself. What did you think was happening at the time, because you must have been gas lighting yourself to a certain degree. Well, I agreed with that that I thought, well, it's me. It's easy to be very self critical, and it was just another reason to be done on myself and it was just a lot of self loathing. It was a very difficult time because

I thought it was my fault. So when I look back at that time, I just remember all these issues that I had that I didn't know was something, and instead I blamed myself. But this wasn't her fault. It wasn't something she could just work through with some extra practice session or drills. And little did sixteen year old cam No, these were the first symptoms of a disease that was about to rapidly change the course of her life. Like a year later, I just kept complaining about it.

My room was done in the basement, and so running up and down the stairs is a very normal thing for me to do, and then suddenly it became really difficult. I just couldn't. I would try to run up the stairs and I was like tired by the time I got to the top, and I was like, well, that's strange. Also, a gate or a limp started developing. I was thinking, that's just weird. Am I so lazy or auto shape

that I can't even get my ankle to move? So I did start telling my parents I think there's something wrong, something's going on, And there was still that hesitance of like, okay, I'm you just not trying hard enough. So we went to the family doctor and pretty much he said he thinks one leg is shorter than the other. So for about two years I wore she lift. Nothing was changing, it was just getting worse. And I would tell my parents, hey, this is not getting better, it's actually worse, and this

she lift is kind of hurting. Um. The response will be it's because you're not wearing it. And as it got worse than it became obvious like there's something going on here. From delayed reaction time quickly turning into drop foot as Cam struggled to understand the events, the mysterious deterioration of her mobile city was only just beginning. That must have been such a painful period sixteen seventeen and eighteen where you're trying to draw attention to something you

don't understand, and then you're blamed for the symptoms. Yes, that was very difficult, and honestly it's more difficult in hindsight. I think that's something that a lot of us could potentially do, maybe to our child if our mind isn't there. We don't want to ever go there and consider that it could be a health thing. But now that I know what was wrong, I do feel a little bit of sadness for the young teenage cam who kind of

just had to go through it alone. You know, you're in high school and you just feel like, you know, all my senior friends are playing soccer and I'm the leader who didn't make the team. And again, never in your thoughts are you thinking I must have a disease or disability I didn't know about. But contrary to the challenges, Ken never let what was happening to her physically getting the way of her goals, a theme she'll carry through

her entire journey. She pushed through her first misdiagnosis and set her sights on studying industrial design in college, and as her symptoms worsened, she pushed even harder for answers. So I started seeing specialists because I felt like there's something neurology related. And again I know nothing about medical but what I found throughout the entire process is, Wow, there's no one that is going to help me. They all just gaslight me or give me pills that aren't

helping me and making it worse. I didn't anticipate such a long journey of trying to figure out what was happening to my body, and pretty much every specialist was the same. I would go, they would do some tests, and they were all about the same area of diagnosis around my disease, but it wasn't the diagnosis. So one was like limon girdle, muscludish defy, one was facio scapular moscutif.

One was dematomissitis. While Cam was diligently searching for answers and also working through a grueling industrial design program, she met Jason, who was in the illustration program at the same school. I just saw her. I was like, Wow, who's that and she looks super cute. She jokes that I stalked her, but when I figured out that she was in the industrial design program, I would kind of make my way over to their every once in a while kind of check things out, just to see if

she was around. They instantly became friends, but she made it clear they were just friends for now. So do you remember how she opened up to you? How did her health struggles come up in conversation? You know, we probably talked about it very casually and very lightly. I didn't want to just bring it up and be like, hey, like,

why are you walking with a cane? She brought it up at some point where we're hanging out, and uh, she explained to me a little bit more about the story honestly than the prognosis, because she didn't actually know for sure what she had at that time. But you kind of explained that, yeah, she had been sticking answer for a long time now. Using leg braces and a cane on a daily basis, Cam was able to get around, but it seemed to become more difficult by the month.

Feeling that pressure without a proper treatment, Cam felt more emboldened to move on to the next doctor to try a different approach to figuring out what was wrong. So I had about six different diagnoses. Two of the diagnosis I had early on limb girl on muscaro distro feat and polymositas. Those seem like just by based on the symptoms, that those could be it. But obviously after a while living in and taking the medication, it was just a

feeling like, I don't think those are it. On top of the frustration and mental toll it was taking on her to constantly feel an answer was always eluding her. It was increasingly difficult for Cam to even get herself to these appointments on her own, but she was determined to find an answer because she held onto the hope that if she did, her mobility could be restored. So there was an urgency for you to get a diagnosis, because did you think that if you got the right

diagnosis you could reset things, that there would be a cure. Well, yeah, any kind of treatment, and the answer is always better than the unknown, even if it's a terrible answer, at least as an answer, because then you don't feel crazy or you don't feel so alone. So it's really the answer that you're looking for. Not ever realizing it could be this significant and this life altering, I just thought, well, there's something, and they'll give me some medicine and I'll

be fine. Desperate to find the potential treatment that could slow or even reverse the loss of her mobility. Cam hit an emotional wall when a neurologist took eight months to give her the results of a biopsy, despite her sir, though she sympathizes with her doctors. And so I'd have to drag my disabled body using a cane and leg braces into this hospital center and they would tell me, oh, we don't have your results yet, and this is eight months later, and then I would go back in again

and they would say we don't have your results. And I was thinking, like, what is going on? And I just finally said, you know how difficult it is for me to come in here. Why wouldn't you guys tell me that you don't have them and make me come into an appointment the lead neurologist, he basically said, And I was getting cheery, and he knew my parents are going through divorce at the time, and you know, college is very difficult, and he basically said, oh, I'm sorry.

Is it because your parents are getting a divorce? Do you need some medication for that? And I get it. I have sympathy for doctors. I get that they're getting a lot of non specialists coming and telling them what they think is wrong. But there is also something to that where the person does know their body the most and got the most and involved to try to solve it. Cam was on an emotional pendulum, swinging from determination to

loneliness and back again. After five diagnoses that never seemed to fit and traveling all over Michigan trying to find an answer, Cam had an idea and a glimmer of hope to go to the best hospital in the country for rare diseases, the Mayo Clinic. It's so weird looking back on it, but when you're in it, all these things aren't adding up. It only adds up in hindsight. We'll be right back with Symptomatic, a Medical Mystery Podcast.

Now back to Symptomatic, a Medical Mystery Podcast. Cam had been a rising soccer star in high school when some mysterious illness started targeting her legs, taking away her mobility piece by piece while juggling assignments in a grueling design program. As a very independent young adult, she went on a mission to try to find answers as to what had been ailing her. When you're in it, all these things

aren't adding up. It only adds up in hindsight, But you know, at the time, you're just like, I don't know. I'm trying to finish college. I know there's some kind of disability or something going on here. So that was very important for me to finish college, and so I was very hyper focused on making sure I get my degree while I'm trying to figure out my diagnoses. But now she had a new possibility for hope of the diagnosis. She was traveling to the Mayo Clinic to see the

best doctors in the country. So I flew there actually by myself. Um, which is really difficult looking back. How old are you at this point? I mean I was old enough. I was sobaly like twenty four, but it didn't actually bother them, and it doesn't old like um more so as an older person just thinking back on it. Cam was at the Mayo Clinic for almost a week, going through a gauntlet of tests trying to get to the root of the issue. But she only had to wait two weeks to get a phone call that would

change her life. I was in my parents kitchen on the phone the Wins with chords. They said, you have Genie myopathy, and I was like, Okay, well, what do I do with that? How do I even know I still have this? Because I had just gotten five different incorrect diagnoses. Though Cam had reservations at the time, the diagnosis was correct. She finally had an answer to what had been slowly taking her mobility from her since she

was a teenager. Genny myopathy. It's a hereditary muscle disorder that starts when you're born, but the actual symptoms don't

start until usually your teens or twenties early adulthood. Often start with weakness in distal muscles distal meaning towards your hands and feet, so often a foot drop where you can't lift your feet up at the ankles, and then progresses slowly throughout the body and your skeletal muscles in your limbs, and over the next ten to twenty years, patients may lose the ability to walk and may have

to rely on a wheelchair. They may have trouble with breathing in less common cases, but it is slowly progressive. That was Dr Minichia Corp, an Assistant professor a neuromuscular specialist at UC Irvine. She's also the doctor currently overseeing Cam's care. Cam struggled for years to get answers to

what was happening to her. Is that uncommon with Jenny myopathy. No, it's very common to not have a diagnosis for a long time, especially in the days before, maybe five years ago, where genetic testing became more readily available and much cheaper. So now we can diagnose it pretty fast. I mean, I would say, as soon as someone came to a ner muscular special lit's clinic, we could do a genetic

panel and find out within a few weeks. But before that, I mean when she was being worked up in the early two thousands, genetic testing wasn't readily available, and so she, for example, went through multiple muscle biopsies, and they could tell there was obviously some kind of muscular dystrophy going on, but to nail down exactly what type was a much longer process. Cam was now equipped with the knowledge of

what had been attacking her. It now had a name, but coming to terms with her options hope of finding a cure and gaining back the mobility she had already lost was a battle of its own. When I'm reading the prognosis of this disease, I really don't know what to think. Because it's telling me, Okay, you're gonna not be able to walk, You're going to go into a

wheelchair and complete immobility. And it's not like I didn't believe it, but you look at it and you're like, wait, I'm going to not be able to move in the future. It's like maybe your mind does some tricks and doesn't want to accept that, but you don't know what that means until it starts happening. I read it, I knew

what was going to happen. But as I've gone through these stages of the disease and progressing and different mile stones in my body, I've realized how little you can truly understand textbook jargon of what's going to happen to you. And that's something that has couraged the way I share, where I make it more personal, because you don't realize

that when you eat. Even the person that's experiencing it struggling to wrap her head around a prognosis that says her muscles will slowly deteriorate until she loses all of her motor skills. She goes from feeling alone on her journey for a diagnosis into a deeper pit of despair after having one. It was kind of really dark time. It's something that I've recently shared on my Instagram over the summer, very lightly. I mentioned that I was serious. Idal it was just like, well what do I do?

What is? You know? What's happening? Um? And there's an element of your feeling like your life is over because there's this association with disabilities that it's not a life worth living, which now is a disability advocate for over twenty years, I realized that's a very harmful and incorrect assessment. But you know, you don't know that as a child, when I looked at someone disabled, you just view it

as something like, that's so unfortunate. And so we've been riddled with all of these narratives of disability and disabled life, of that it's not worth living. While still struggling to reconcile what her future will be like with her life's goals and ambitions, Kim goes back to the physician whose dispiriting advice gave Cam the push she needed to take back the reins. Then I went to my sociatrists and he said, oh, I have heard of that. It's extremely rare.

My suggestion to you is you should quit college, immediately, get a less ambitious job, maybe a secretary, and just get ready for a life of like basically nothing. So the doctor basically told you you're up against insurmountable odds. Your best strategy at this point is just give up. Yes, that is exactly what he said, which is really shocking. Instead of internalizing her diagnosis is something that would restrict her life, she took it as a reason to take

advantage of every single day from that moment on. Cam's attitude from that respect has always been a benefit to her because Cam has a very resistant, resilient kind of personality, meaning if you tell her she can't do something, she's going to say, oh, yeah, I can. And so that was pretty much what happened as she said, well, yeah, I am going to finish school and I am going to have a career, and largely that's what she did.

I just felt like that diagnosis put a lot of time moment in my life suddenly, and that's probably what catapulted or the origin of my philosophy of really living in a lot. I came from Cam immediately went on a soul searching journey to Korea. It was the first time that she had visited her place of birth, even going back to the orphanage she lived in until she was four. The trip restored her, It invigorated her, It

reshaped her perspective on her future. I booked ticket, I left two weeks later, and I think that really helped change my thinking. It's not that it wasn't still difficult, but it just realizing that there was a lot to live for. There's a lot of life out there, and there's a lot of things that I want to do, and I think I subconstiantly made a decision that I was going to live my life as fully as I could.

Before immobility happened, Cam was still slowly losing control of her legs when she returned to Michigan from her trip. She quickly realized she needed to live somewhere warmer to make her lifestyle easier. Michigan is a lot of winters, and what would happen is I'd fallen the ice outside my door and just be laying there looking up at you know, the dar guy, And I thought, I need to get out of here. I need to go to warm estate because I know I'm going to get more disabled.

And I decided to move to California. Out of the blue, Jason called and he said, Oh, I'm in California right now. If you want to come stay with my roommate and I while you look for a job, that's perfectly fine. And so that's how it started. It's kind of funny because I joked that when she came out here, I was like, oh, yeah, you're looking for work, I can

you can stay with me in my roommates. But it was secretly entrapment in the beginning stages and coming into California, it was a little nervous, like I didn't technically know Jason super well. We're friends, but you know, I'm going to go live with them, and I'm having much difficult time getting around and it didn't have a job, so it was a little scary, but it worked out. I got a job. I started working at Mattel and you know, my whole life in California began. After her diagnosis, Cam

was determined to dictate her in dependence and success. She started traveling more, moved to California to pursue her design career, and discovered the world of disability advocacy. Cam learned to share her story and awareness the best way she knew

how through her design and her art. Sometimes, though, you know, get emotional and cry or something like when I was drawing the piece that was signifying my beginnings of going into a wheelchair, you know, stuff like that, is that you're really working that out, So it is a form of therapy for yourself. They say, picture's it worth a thousand words, And I think Cam really maximized that ability

to the fullest extent. But yeah, she still gets recognized to this day for her arts, and I still see comments on our posts and social media just saying like, yeah, that's exactly what I'm experiencing, what I'm feeling, or I never even thought of the think of it that way. Cam uses her art to process and reflect on her journey. Her art is beautiful and emotionally evocative, so much so that she's gained a significant following community which resonates with

the new experience of Cam's story, including Dr Corb. One of the other ones that caught my eye when I was looking through her gallery this week was one where

she's kind of behind these bars. She's more of like the head and she's using puppet strings to manipulate her limbs which are just disembodied, you know, legs and arms that are kind of in the foreground of the picture, and it says in another place in the land, far away, she was able to move her limbs just with the pull off a string, and I thought that was really powerful way of looking at it. And it's hard for us, if we're not affected with those symptoms, to understand what

it feels like for them on that side. I have seen those comments as well in social media that other people pick up and it's like, Hey, this is possible. I don't have to withhold this from myself. I can't do this. Cam's openness to share her story with other people through both her art and her warm spirit, has led her to become a speaker for different advocacy groups around the world, in particular g n E myopathy patient groups.

There's patients in Japan as well. They had heard about Kim and so they had invited her over to kind of consult her on how to start a patient advocate group. So we went over and we talked with them and we had a great time, and they showed us around and I was like, what better time than now to uh,

you know, do something unique and proposed to her. Buoyed by Jason's unwavering support and the hopes that sharing her story might help others navigating their own struggles, Km's outlets through art and advocacy address the visceral reality of living at the mercy of her condition. Jason and Cam are now working through how to live with the constantly changing nature of g n E myopathy. I'm an artist. I need my hands. So that's kind of been illuming shadow

that Okay, this is another thing I'm gonna lose. Wow. So the grieving process has become something that you've had to look at as almost a marathon. Yes, it feels like it never ends, and you get adjusted to one stage and then another one comes up. You're like, Okay, I can deal with this level of progression. For me at the stage, it's the same thing I say every year. If it could just stop right here, I'd be I'd

be fine with it. I don't mind being disabled. I'm very used to it now and I think it's brought a lot of perspective an interesting way of living. But I'm constantly like I just wish it would stop right here. I wish it would stop taking more, because that's the difficulty is once you adjust to a new level, then another loss happens, so you have to go through the

whole process of good. I think when we learned about it, like what the full diagnosis was, and you hear the words like complete immobility, like you have an idea what that means. It's kind of an abstract concept at that time. My initial reaction was like, oh, like, oh my god, and then I felt really bad ad for what Cam was going to have to go up against. There's a lot of negatively associated with it, but my initial reaction was because we have been together for a while and

I was invested. It was like, well, it's terrible, but I'm glad that I'll be able to at least be able to be here for him. Cam has been on a long, arduous journey to understand what was happening to her, fighting against misdiagnoses and internal gas lighting while feeling herself slowly lose control of her body. Cam's experience has only reinforced her fortitude to take advantage of the opportunity she has in her life, countering her loss of mobility with

creativity and purpose. So even though I'm sure she feels trapped in her body, She's not letting that stop her. She's still active with multiple creative outlets in terms of her writing and her art, and you know, speaking out for others to be able to find their diagnosis faster,

you know, with less inconvenience. I think that's incredible. The word heroic is usually applied to these superhero type characters who are invulnerable it can do anything, but like, that's not heroic if you're vulnerable, right, Like being heroic is someone who is vulnerable, someone who can be hurts, whether physically or emotionally. I remember how difficult it was when I was alone going through this, and what I've realized through like fifteen years of advocacy is everyone just wants

to feel seen, they want to feel validated. It's very awarding that people can feel a little bit more whole or connected just through the aspect of someone else sharing their story. And that's all I'm doing, is sharing my story. For more information on g n E myopathy, go to Cure g n E m dot org or check out the first ever g N E myopathy Clinic at U c Irvine's Neuromuscular Center, led by one of Dr corbess colleagues.

My name is Camrad Lusk, and it took me about eight years to find a diagnosis for gn E myopathy. On the season finale of Symptomatic, August has been suffering since the age of five, with symptoms which include inexplicable sores and excruciating pain. You've been in so much pain that you're like, Wow, I'm screaming, but it's not helping. Perhaps I should stop screaming because it's not helping. What can I do? What can I do? There's nothing I can do. He goes on a search for diagnosis that,

even once found, continues to provide daunting medical challenges. Symptomatic a Medical Mystery podcast is an original podcast from I Heart Radio. Are shows hosted by me Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster. Our producers are cra Kaiser and John Irwin.