Case #07: Kam 29:05

As this limp was developing and you're in high school, never in your thoughts are you thinking, I must have a disease or disability I didn't know about. I know there's going to be a lot of struggle and things are going to get worse, but you have to be resistant. You have to be willing to fight. You have to be willing to push past your means in order to live a quote-unquote normal life. There's no magic pill that you can take. You know, that's terrifying. It was kind of a 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 that 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. I'm Lauren Bright Pacheco, and this is Symptomatic. When you meet Kam Redlosk, you immediately notice her pink hair. 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 and 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 Cam's like, you know what, I can't really avoid people seeing my insecurities to 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 palate. I also had a deadly liver disease and chicken pox. I had measles. And this is all in the first four months without

a mother or parents, whatever. I was told she abandoned me right at the maternity clinic. And I spent four years in an orphanage until an American family in 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 too, moving easily to varsity level as a high school junior. Soccer was a huge part of my life. I played for 13 years. And then when I got into varsity 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 varsity soccer team. And I felt like I was just embarrassing. I'm like, what is going on? I can't. I am not myself. What did you think was happening at the time? Because you must have been gaslighting 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 down 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 16-year-old Cam know. 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 down 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 gait or a limp started developing. I was thinking, that's just weird. Am I so lazy or out of 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 is going on. And there was still that hesitance of like, oh, Cam, you're 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 a shoe 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 shoe lift is kind of hurting. The response would be, it's because you're not wearing it. And as it got worse, then 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 mobility was only just beginning. That must have been such a painful period, 16, 17, and 18, 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 loser 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, Kem never let what was happening to her physically get in 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 is 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

And they were all about the same area of diagnosis around my disease, but it wasn't the diagnosis. So one was like limb and girdle muscular dystrophy. One was facial scapular muscular dystrophy. One was dermatomyositis. 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, oh, wow, who's that?

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 there every once in a while and 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 while we were hanging out. And 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 she kind of explained that, yeah, she had been

seeking an 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 diagnoses I had early on, limb girdle muscular dystrophy and polymyositis. Those seem like just by based on the symptoms that those could be it. But obviously after a while living it 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 on to 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 it's 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 a 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 search, 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 teary. And he knew my parents were going through a 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 in 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 skin 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 a diagnosis. She was traveling to the Mayo Clinic to see the best doctors in the country.

So I flew there actually by myself, which is really difficult looking back. How old are you at this point? I mean, I was old enough. I was probably like 24, but it didn't actually bother me then. It does, like, 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 ones with cords. They said, you have G&E 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, G&E 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 20s, early adulthood, often starts 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 it progresses slowly throughout the body in your skeletal muscles, in your limbs. And over the next 10 to 20 years, patients may lose the ability to walk and may have to rely on a wheelchair or

They may have trouble with breathing in less common cases, but it is slowly progressive. That was Dr. Manisha Korb, an assistant professor and 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 GNE 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 neuromuscular specialized 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 2000s, genetic testing wasn't readily available anymore.

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 going to 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

But you don't know what that means until it starts happening. Because 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 milestones 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 encouraged the way I share, where I make it more personal because you don't realize that when you read it, 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 a really dark time and something that I've recently shared on my Instagram over the summer very lightly. I mentioned that I was suicidal. It was just like, well, what do I do? What is, you know, what's happening?

And there's an element of you feeling like your life is over because there's this association with disability that it's not a life worth living, which now as a disability advocate for over 20 years, I realize 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, Cam goes back to the physician whose dispiriting advice gave Cam the push she needed to take back the reins. Then I went to my physiatrist 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 because

Instead of internalizing her diagnosis as 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 is 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 limit on my life suddenly. And that's probably what

or the origin of my philosophy of really living your life 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 a 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's 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 subconsciously 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 fall on the ice right outside my door and just be laying there looking up at, you know, the dark sky. And I thought, I need to get out of here. I need to go to warm state 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 joke that when she came out here, I was like, oh, yeah, you're looking for work. I can you can stay with me and my roommates. But it was secretly entrapment.

In the beginning stages of 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 I 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 yeah, my whole life in California began.

After her diagnosis, Cam was determined to dictate her independence 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 I'll 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. It's like you're really working that out. So it is a form of therapy for yourself. They say pictures are 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 art. And I still see comments on her posts and

social media just saying like, yeah, that's exactly what I'm experiencing and 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, a community which resonates with the new experience of Cam's story, including Dr. Korb. 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 and

She's more of like the head and she's using puppet strings to manipulate her limbs, which are just disembodied legs and arms that are kind of in the foreground of the picture. And it says in another place in a land far away, she was able to move her limbs just with the pull of a string. And I thought that was really powerful way of looking at it. And it's hard for us to

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 on social media that other people pick up on. It's like, hey, this is possible. I don't have to withhold this from myself. I can 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&E myopathy patient groups. There's patients in Japan as well.

They had heard about Kim, and so they 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 do something unique and propose to her.

Buoyed by Jason's unwavering support and the hopes that sharing her story might help others navigating their own struggles, Cam'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 GNE myopathy. I'm an artist. I need my hands. So that's kind of been a looming shadow that, okay, this is another thing I'm going to 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 you

Then another one comes up. You're like, okay, I can deal with this level of progression. For me at this stage, it's the same thing I say every year. If it could just stop right here, 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 again. 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 afterwards.

for what Cam was going to have to go up against. There's a lot of negativity associated with it, but my initial reaction was, because we had 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, at least be able to be here for Cam.

Cam has been on a long, arduous journey to understand what was happening to her, fighting against misdiagnoses and internal gaslighting while feeling herself slowly lose control of her body. Cam's experience has only reinforced her fortitude to take advantage of the opportunities 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

is usually applied to these superhero type characters who are invulnerable and can do anything, but that's not heroic if you're invulnerable, right? Like being heroic is someone who is vulnerable, someone who can be hurt, whether physically or emotionally. I remember how difficult it was when I was alone going through this.

And what I've realized through like 15 years of advocacy is everyone just wants to feel seen. They want to feel validated. It's very rewarding 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 GNE myopathy, go to curegnem.org or check out the first ever GNE myopathy clinic at UC Irvine's Neuromuscular Center led by one of Dr. Korb's colleagues. My name is Kam Rudlosk and it took me about eight years to find a diagnosis for GNE 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 ever been in so much pain that you're like, 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 a diagnosis that even once found, continues to provide daunting medical challenges.

Symptomatic, a medical mystery podcast, is an original podcast from iHeartRadio. Our show's hosted by me, Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post-production is James Foster. Our producers are Ciara Kaiser and John Irwin.