November 28, 2022 • 29 mins
Kam is rapidly losing her motor skills as she’s attacked by an unknown & unseen disease. In a matter of months, she goes from starring on her high school soccer team to struggling to make it up the stairs. Bouncing between doctors and facing countless misdiagnoses, Kam never wavers in her chase to uncover what is threatening to take away her mobility.
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****** SPOILER ALERT BELOW ******
For more information on GNE Myopathy go to CureGNEM.org and check out the first ever GNE myopathy clinic at UC Irvine’s neuromuscular center led by one of Dr. Korb’s colleagues. You can also find Kam Redlawsk on Instagram & Twitter @KamRedlawsk.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
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
(00:23):
live a quote unquote normal life. There's no magic pill
that you can take. You know, that's terrifying. It was
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
(00:49):
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.
(01:16):
Lauren Bright the checko and this is symptomatic. When you
meet cam Redloss, you immediately notice her pink hare and
(01:37):
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
(02:02):
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
(02:23):
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
(02:47):
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
(03:08):
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
(03:29):
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
(03:50):
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
(04:12):
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
(04:34):
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
(04:55):
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,
(05:17):
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
(05:41):
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
(06:03):
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
(06:23):
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,
(06:45):
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
(07:08):
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
(07:30):
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
(07:52):
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,
(08:13):
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
(08:36):
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
(08:57):
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
(09:21):
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
(09:44):
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
(10:07):
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
(10:27):
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
(10:49):
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,
(11:11):
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
(11:33):
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
(11:55):
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
(12:17):
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.
(12:47):
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
(13:09):
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
(13:32):
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
(13:52):
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
(14:14):
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
(14:34):
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
(14:55):
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
(15:16):
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
(15:38):
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
(15:59):
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
(16:21):
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
(16:43):
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
(17:03):
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
(17:24):
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.
(17:47):
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.
(18:08):
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
(18:28):
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
(18:51):
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.
(19:16):
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
(19:36):
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
(19:59):
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
(20:21):
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
(20:43):
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.
(21:07):
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
(21:28):
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
(21:51):
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
(22:12):
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
(22:33):
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
(22:57):
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
(23:19):
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
(23:39):
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.
(24:03):
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,
(24:23):
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
(24:46):
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
(25:07):
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
(25:29):
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
(25:51):
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
(26:13):
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
(26:36):
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
(26:58):
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
(27:20):
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.
(27:41):
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.
(28:04):
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
(28:26):
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
(28:50):
post production is James Foster. Our producers are cra Kaiser
and John Irwin.
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
(00:23):
live a quote unquote normal life. There's no magic pill
that you can take. You know, that's terrifying. It was
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
(00:49):
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.
(01:16):
Lauren Bright the checko and this is symptomatic. When you
meet cam Redloss, you immediately notice her pink hare and
(01:37):
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
(02:02):
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
(02:23):
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
(02:47):
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
(03:08):
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
(03:29):
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
(03:50):
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
(04:12):
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
(04:34):
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
(04:55):
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,
(05:17):
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
(05:41):
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
(06:03):
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
(06:23):
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,
(06:45):
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
(07:08):
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
(07:30):
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
(07:52):
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,
(08:13):
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
(08:36):
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
(08:57):
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
(09:21):
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
(09:44):
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
(10:07):
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
(10:27):
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
(10:49):
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,
(11:11):
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
(11:33):
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
(11:55):
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
(12:17):
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.
(12:47):
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
(13:09):
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
(13:32):
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
(13:52):
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
(14:14):
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
(14:34):
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
(14:55):
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
(15:16):
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
(15:38):
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
(15:59):
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
(16:21):
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
(16:43):
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
(17:03):
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
(17:24):
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.
(17:47):
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.
(18:08):
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
(18:28):
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
(18:51):
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.
(19:16):
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
(19:36):
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
(19:59):
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
(20:21):
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
(20:43):
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.
(21:07):
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
(21:28):
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
(21:51):
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
(22:12):
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
(22:33):
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
(22:57):
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
(23:19):
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
(23:39):
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.
(24:03):
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,
(24:23):
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
(24:46):
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
(25:07):
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
(25:29):
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
(25:51):
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
(26:13):
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
(26:36):
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
(26:58):
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
(27:20):
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.
(27:41):
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.
(28:04):
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
(28:26):
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
(28:50):
post production is James Foster. Our producers are cra Kaiser
and John Irwin.
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