0:03

As this limp was developing and you're in

0:05

high school. Never in your thoughts

0:07

are you thinking I must have a disease

0:10

or disability I didn't know about. I

0:12

know there's going to be a lot of struggle and

0:15

things are going to get worse. But you

0:17

have to be resistant. You have to be willing to fight,

0:19

you have to be willing to push past

0:21

your means in order to live

0:23

a quote unquote normal life.

0:26

There's no magic pill that you can take. You

0:29

know, that's terrifying. It

0:31

was kind of really dark time. It was

0:33

just like, well, what do I do?

0:36

What is you know, what's happening? You're

0:38

feeling like your life is over? How

0:48

terrifying would it be to fight an

0:50

unknown enemy, one you didn't

0:53

recognize and didn't see coming. What

0:56

if that enemy was coming from within

0:58

a disease even doctors

1:01

couldn't identify. Nearly

1:03

half of all Americans suffer

1:05

from some chronic illness, and many

1:08

struggle for an accurate diagnosis.

1:11

These are their stories. A.

1:16

Lauren Bright the checko and this is

1:19

symptomatic. When

1:34

you meet cam Redloss, you immediately

1:36

notice her pink hare and then as

1:38

you talk to her, you quickly notice that she

1:40

has a fiery and creative energy

1:42

to match. So I'm actually a self

1:44

taught illustrator and all

1:46

of my drawings are related to moments

1:49

inspired by my rare debilitating

1:52

condition that it just kind of took on a life

1:54

of its own. Cam has gained

1:56

a following for her emotionally evocative

1:58

illustrations, which reflect her long,

2:01

arduous journey to find a diagnosis and

2:04

learn how to live with an elusive disease

2:06

that has altered the course of her life.

2:09

One of the things that she's really good at, and

2:11

I don't even know if she does it purposely, is the fact

2:13

that she's so open and vulnerable

2:15

about herself. You know, most people shy

2:18

away from wanting to be

2:20

too honest or show their insecurities or

2:22

even faults, and Cams like, you

2:24

know what, you know, I can't really avoid

2:27

people seeing my insecurities a certain

2:29

extent, and so I might as well just be open about

2:31

it and talk about it

2:33

myself and let people into the conversation.

2:36

That is her husband Jason, who first

2:39

met Cam when they were in design school in Michigan.

2:41

But Cam's symptomatic journey started

2:44

long before then. So

2:46

I'm a Korean American adoptee and

2:49

I was abandoned at birth. I was

2:51

born with a cleft palette. I

2:54

also had a deadly livery

2:57

disease and chicken pox.

2:59

I had measles and this

3:02

is all in the first four months without a

3:04

mother or parents whatever. Um. I

3:07

was told to abandoned me right at the maternity clinic

3:09

and I spent four years in an orphanage until

3:11

an American family and Michigan adopted

3:14

me. I have three brothers. I always

3:16

say they were homemade. I was imported. It

3:18

was a very typical Midwest upbringing.

3:22

Cam grew up in a pretty competitive soccer household,

3:25

where her father once played and

3:27

brothers were eager to follow in his cleats.

3:30

Cam showed impressive talent on the field

3:32

to moving easily to varsity level

3:35

as a high school junior. Soccer

3:37

is a huge part of my life. I played the thirteen

3:39

years and then when I got

3:41

divarsity soccer, I was just noticing

3:43

I was running slower. I would

3:46

kick and it was such a disconnect

3:49

with my mind and my body and

3:51

there would be such a delay and I'm like, what is going

3:54

on here? I am on the virsity soccer

3:56

team and I felt like I was just embarrassing.

3:58

I'm like, what's going on? I can't I am not myself.

4:02

What did you think was happening at the time,

4:04

because you must have been gas lighting yourself

4:06

to a certain degree. Well,

4:08

I agreed with that that I thought, well, it's

4:11

me. It's easy to be very self

4:13

critical, and it was just another reason

4:15

to be done on myself and it was just a lot of

4:17

self loathing. It was a very difficult time

4:19

because I thought it was my fault. So

4:21

when I look back at that time, I

4:24

just remember all these issues

4:27

that I had that I didn't know was

4:29

something, and instead I blamed myself.

4:32

But this wasn't her fault. It

4:34

wasn't something she could just work through with

4:36

some extra practice session or drills.

4:39

And little did sixteen year old cam No, these

4:41

were the first symptoms of a disease that was about

4:44

to rapidly change the course of her life.

4:48

Like a year later, I just kept complaining about

4:51

it. My room was done in the basement, and so running

4:53

up and down the stairs is a very normal thing for me to

4:55

do, and then suddenly it became really difficult.

4:57

I just couldn't. I would

5:00

try to run up the stairs and I was like tired by

5:02

the time I got to the top, and I was like, well, that's strange.

5:05

Also, a gate or a limp

5:07

started developing. I was thinking, that's

5:09

just weird. Am I so lazy or

5:11

auto shape that I can't even get my

5:13

ankle to move? So I did start telling

5:15

my parents I think there's something wrong, something's

5:18

going on, And there was still that hesitance

5:20

of like, okay, I'm you just not trying hard

5:22

enough. So we went to the family doctor

5:25

and pretty much he said he thinks one

5:27

leg is shorter than the other. So for about

5:30

two years I wore she

5:32

lift. Nothing was changing,

5:34

it was just getting worse. And I would tell my parents,

5:36

hey, this is not getting

5:38

better, it's actually worse, and

5:41

this she lift is kind of hurting. Um.

5:44

The response will be it's because you're not wearing it.

5:46

And as it got worse than it became obvious

5:49

like there's something going on here. From

5:51

delayed reaction time quickly turning

5:53

into drop foot as Cam struggled

5:56

to understand the events, the mysterious

5:58

deterioration of her mobile city was

6:01

only just beginning. That must

6:03

have been such a painful period

6:05

sixteen seventeen and eighteen

6:08

where you're trying to draw

6:10

attention to something you don't understand,

6:13

and then you're blamed for the symptoms.

6:16

Yes, that was very difficult,

6:18

and honestly it's more difficult in hindsight.

6:21

I think that's something that a lot of us

6:23

could potentially do, maybe to our child

6:25

if our mind isn't there. We

6:27

don't want to ever go

6:30

there and consider that it could be a health

6:32

thing. But now that I know what was wrong,

6:34

I do feel a little bit of sadness

6:38

for the young teenage cam

6:40

who kind of just had to go through it alone.

6:42

You know, you're in high school and you just feel

6:44

like, you know, all my senior friends

6:46

are playing soccer and I'm the leader

6:49

who didn't make the team. And again,

6:51

never in your thoughts are you thinking I

6:54

must have a disease or disability I didn't

6:56

know about. But contrary

6:58

to the challenges, Ken never let

7:00

what was happening to her physically getting the

7:02

way of her goals, a theme she'll carry

7:04

through her entire journey. She pushed through

7:07

her first misdiagnosis and set

7:09

her sights on studying industrial design

7:11

in college, and as her symptoms

7:13

worsened, she pushed even harder for

7:15

answers. So I started

7:18

seeing specialists because I felt like there's

7:20

something neurology related. And again

7:22

I know nothing about medical but what I found

7:25

throughout the entire process is, Wow,

7:28

there's no one that is going to help

7:30

me. They all just gaslight me or

7:32

give me pills that aren't helping me and making it

7:34

worse. I didn't anticipate such

7:37

a long journey of trying to figure out what

7:39

was happening to my body, and pretty

7:41

much every specialist was the same. I would go,

7:44

they would do some tests, and

7:46

they were all about the same area of diagnosis

7:49

around my disease, but it wasn't the diagnosis.

7:51

So one was like limon girdle, muscludish

7:53

defy, one was facio scapular

7:56

moscutif. One was dematomissitis.

8:00

While Cam was diligently searching for answers

8:03

and also working through a grueling industrial

8:05

design program, she met Jason,

8:07

who was in the illustration program at the

8:09

same school. I

8:12

just saw her. I was like, Wow, who's that and

8:14

she looks super cute. She jokes

8:16

that I stalked her, but when

8:19

I figured out that she was in the industrial design

8:21

program, I would kind of make my way over to their every

8:23

once in a while kind of check things out, just to see if

8:26

she was around. They instantly became

8:28

friends, but she made it clear they

8:30

were just friends for now.

8:32

So do you remember how she opened up

8:34

to you? How did her

8:37

health struggles come up

8:39

in conversation? You

8:42

know, we probably talked about it very casually

8:44

and very lightly. I

8:46

didn't want to just bring it up and be like, hey,

8:49

like, why are you walking with a cane? She

8:51

brought it up at some point where we're hanging out, and

8:54

uh, she explained to me a

8:56

little bit more about the story honestly

8:58

than the prognosis, because

9:01

she didn't actually know for sure

9:03

what she had at that time. But you kind

9:05

of explained that, yeah, she had been sticking

9:08

answer for a long time now.

9:10

Using leg braces and a cane on a daily

9:12

basis, Cam was able to get around,

9:14

but it seemed to become more difficult by the month.

9:17

Feeling that pressure without a proper treatment,

9:20

Cam felt more emboldened to move

9:22

on to the next doctor to try a different approach

9:25

to figuring out what was wrong. So

9:28

I had about six different diagnoses. Two

9:31

of the diagnosis I had early on limb

9:33

girl on muscaro distro feat and

9:35

polymositas. Those seem

9:38

like just by based on the symptoms,

9:40

that those could be it. But obviously

9:42

after a while living

9:45

in and taking the medication, it

9:47

was just a feeling like, I don't think those

9:49

are it. On top of the frustration

9:52

and mental toll it was taking on her

9:54

to constantly feel an answer was always

9:56

eluding her. It was increasingly

9:58

difficult for Cam to even get

10:00

herself to these appointments on her own, but

10:03

she was determined to find an answer because

10:05

she held onto the hope that if she

10:07

did, her mobility could be restored.

10:10

So there was an urgency for

10:13

you to get a diagnosis, because

10:15

did you think that if you

10:18

got the right diagnosis you could

10:20

reset things, that there would be

10:22

a cure. Well, yeah, any

10:24

kind of treatment, and the answer

10:26

is always better than the unknown, even

10:29

if it's a terrible answer, at least as

10:31

an answer, because then you don't feel crazy

10:34

or you don't feel so

10:36

alone. So it's really the answer

10:38

that you're looking for. Not ever

10:41

realizing it could be this significant and this life

10:43

altering, I just thought, well, there's something, and they'll

10:45

give me some medicine and I'll be fine. Desperate

10:48

to find the potential treatment that could slow

10:50

or even reverse the loss of her mobility.

10:53

Cam hit an emotional wall when a neurologist

10:55

took eight months to give her the results of a

10:57

biopsy, despite her sir,

11:00

though she sympathizes with her

11:02

doctors. And so I'd have to drag my

11:04

disabled body using a cane and leg braces

11:07

into this hospital center and

11:10

they would tell me, oh, we don't have your results yet, and

11:12

this is eight months later, and

11:14

then I would go back in again and they

11:16

would say we don't have your results. And

11:18

I was thinking, like, what is going on?

11:20

And I just finally said, you know how difficult it is

11:23

for me to come in here. Why wouldn't you guys

11:25

tell me that you don't have them

11:27

and make me come into an appointment the

11:29

lead neurologist, he basically said,

11:33

And I was getting cheery, and he knew my parents

11:35

are going through divorce at the time, and you know, college

11:37

is very difficult, and he basically said, oh,

11:40

I'm sorry. Is it because your parents are getting a

11:42

divorce? Do you need some medication for that?

11:45

And I get it. I have sympathy for doctors.

11:48

I get that they're getting a lot of non specialists

11:50

coming and telling them what they think is wrong.

11:53

But there is also something to

11:55

that where the person does know their

11:57

body the most and got the most

12:00

and involved to try to solve it. Cam

12:02

was on an emotional pendulum,

12:04

swinging from determination to loneliness

12:07

and back again. After five

12:09

diagnoses that never seemed to fit and

12:11

traveling all over Michigan trying

12:13

to find an answer, Cam had an

12:15

idea and a glimmer of hope to

12:17

go to the best hospital in the country for rare

12:20

diseases, the Mayo Clinic. It's

12:22

so weird looking back on it, but when

12:24

you're in it, all these things

12:27

aren't adding up. It only

12:29

adds up in hindsight. We'll

12:36

be right back with Symptomatic, a

12:38

Medical Mystery Podcast. Now

12:47

back to Symptomatic, a Medical Mystery

12:50

Podcast. Cam

12:55

had been a rising soccer star in high school when

12:57

some mysterious illness started targeting

12:59

her legs, taking away her mobility

13:02

piece by piece while juggling

13:04

assignments in a grueling design program.

13:06

As a very independent young adult, she

13:08

went on a mission to try to find answers

13:11

as to what had been ailing her. When

13:14

you're in it, all these things

13:16

aren't adding up. It only

13:18

adds up in hindsight, But you

13:21

know, at the time, you're just like, I

13:23

don't know. I'm trying to finish college. I

13:25

know there's some kind of disability or something

13:28

going on here. So that was very important for me to

13:30

finish college, and so I was very hyper

13:32

focused on making sure I get my degree while

13:35

I'm trying to figure out my diagnoses. But

13:38

now she had a new possibility for

13:40

hope of the diagnosis. She was

13:42

traveling to the Mayo Clinic to see the best

13:44

doctors in the country. So I

13:46

flew there actually by myself. Um,

13:49

which is really difficult looking back. How

13:52

old are you at this point? I

13:55

mean I was old enough. I was sobaly like twenty

13:57

four, but it

13:59

didn't actually bother them, and it doesn't

14:01

old like um

14:03

more so as an older person just thinking back on

14:05

it. Cam was at the Mayo Clinic

14:08

for almost a week, going through a gauntlet

14:10

of tests trying to get to the root of the issue. But

14:13

she only had to wait two weeks to

14:15

get a phone call that would change her life.

14:20

I was in my parents kitchen on

14:22

the phone the Wins with chords. They

14:25

said, you have Genie myopathy,

14:28

and I was like, Okay, well, what do I do with that? How

14:30

do I even know I still have this? Because I had just gotten

14:32

five different incorrect diagnoses.

14:36

Though Cam had reservations at the time, the

14:39

diagnosis was correct. She

14:41

finally had an answer to what had been slowly

14:43

taking her mobility from her since she was

14:45

a teenager. Genny myopathy.

14:49

It's a hereditary muscle disorder

14:51

that starts when you're born, but

14:54

the actual symptoms don't start until

14:56

usually your teens or twenties early adulthood.

14:59

Often start with weakness in distal muscles

15:02

distal meaning towards your hands and feet,

15:04

so often a foot drop where you can't lift your feet

15:06

up at the ankles, and then progresses

15:08

slowly throughout the body and your skeletal

15:11

muscles in your limbs, and over

15:13

the next ten to twenty years, patients may lose

15:15

the ability to walk and may have to rely on a wheelchair.

15:18

They may have trouble with breathing in

15:21

less common cases, but it is slowly

15:23

progressive. That was Dr

15:25

Minichia Corp, an Assistant professor

15:27

a neuromuscular specialist at UC

15:30

Irvine. She's also the doctor

15:32

currently overseeing Cam's care. Cam

15:35

struggled for years to get

15:37

answers to what was happening to

15:39

her. Is that uncommon with Jenny

15:41

myopathy. No, it's very

15:43

common to not have a diagnosis for

15:45

a long time, especially in the

15:48

days before, maybe five years ago, where

15:50

genetic testing became more readily available

15:52

and much cheaper. So now

15:55

we can diagnose it pretty fast. I mean, I would

15:57

say, as soon as someone came to a ner

15:59

muscular special lit's clinic, we could

16:01

do a genetic panel and find

16:03

out within a few weeks. But before

16:05

that, I mean when she was being worked up

16:07

in the early two thousands, genetic testing wasn't

16:10

readily available, and so she,

16:12

for example, went through multiple muscle biopsies,

16:15

and they could tell there was obviously some kind

16:17

of muscular dystrophy going on, but to nail

16:19

down exactly what type was a

16:21

much longer process. Cam was now

16:23

equipped with the knowledge of what had been attacking

16:26

her. It now had a name, but coming

16:28

to terms with her options hope

16:30

of finding a cure and gaining back the mobility

16:32

she had already lost was a battle

16:34

of its own. When I'm reading the prognosis

16:38

of this disease, I really don't know what to think. Because

16:40

it's telling me, Okay, you're gonna

16:43

not be able to walk, You're going to go into a wheelchair

16:46

and complete immobility.

16:48

And it's not like I didn't believe it, but you look at

16:50

it and you're like, wait, I'm going to not be able to

16:52

move in the future. It's like maybe your mind

16:54

does some tricks and doesn't want to accept

16:56

that, but you don't know what that means

16:58

until it starts happening. I read it, I

17:01

knew what was going to happen. But as I've

17:03

gone through these stages of the disease

17:05

and progressing and different mile

17:07

stones in my body, I've realized how

17:09

little you can truly understand

17:12

textbook jargon of what's

17:14

going to happen to you. And that's

17:17

something that has couraged the way I share, where

17:19

I make it more personal, because you

17:21

don't realize that when you eat. Even the person that's

17:23

experiencing it struggling to wrap

17:25

her head around a prognosis that says her muscles

17:28

will slowly deteriorate until she loses

17:30

all of her motor skills. She goes

17:32

from feeling alone on her journey for a

17:34

diagnosis into a

17:36

deeper pit of despair after having

17:38

one. It was kind of really

17:40

dark time. It's something that I've recently shared on my

17:42

Instagram over the summer,

17:45

very lightly. I mentioned that I was serious.

17:47

Idal it was just like, well what

17:50

do I do? What is? You know? What's happening? Um?

17:54

And there's an element of your feeling like your life is

17:56

over because there's this association

17:58

with disabilities that it's not a life worth

18:01

living, which now is a disability advocate

18:03

for over twenty years, I realized that's a very

18:05

harmful and incorrect assessment.

18:08

But you know, you don't know

18:10

that as a child, when I looked at someone disabled,

18:13

you just view it as something like, that's so

18:15

unfortunate. And so we've

18:18

been riddled with all of these narratives

18:20

of disability and disabled life, of that

18:22

it's not worth living. While still

18:24

struggling to reconcile what her future

18:27

will be like with her life's goals

18:29

and ambitions, Kim goes back to the

18:31

physician whose dispiriting advice

18:33

gave Cam the push she needed to take

18:35

back the reins. Then I went

18:37

to my sociatrists and he said, oh, I

18:39

have heard of that. It's extremely rare.

18:42

My suggestion to you is you should

18:44

quit college, immediately, get

18:46

a less ambitious job, maybe

18:49

a secretary, and just

18:51

get ready for a life of like basically

18:53

nothing. So the

18:56

doctor basically told you you're

19:00

up against insurmountable odds.

19:03

Your best strategy at this point

19:05

is just give up. Yes,

19:09

that is exactly what he said, which

19:11

is really shocking. Instead

19:16

of internalizing her diagnosis is something

19:18

that would restrict her life, she took

19:20

it as a reason to take advantage of every

19:22

single day from that moment on. Cam's

19:25

attitude from that respect has always

19:28

been a benefit to her because Cam

19:30

has a very resistant, resilient

19:33

kind of personality, meaning if you tell her she can't

19:35

do something, she's going to say, oh,

19:37

yeah, I can. And so that was

19:39

pretty much what happened as she said, well,

19:42

yeah, I am going to finish school and I am going to

19:44

have a career, and largely that's

19:46

what she did. I just felt like that

19:48

diagnosis put a lot of time moment

19:51

in my life suddenly, and

19:53

that's probably what catapulted

19:56

or the origin of my philosophy

19:58

of really living in a lot. I came from

20:01

Cam immediately went on a soul searching

20:03

journey to Korea. It was the first time

20:05

that she had visited her place of birth, even

20:08

going back to the orphanage she lived in until

20:10

she was four. The trip restored

20:12

her, It invigorated her, It reshaped

20:14

her perspective on her future. I

20:17

booked ticket, I left two weeks later, and

20:19

I think that really helped change

20:22

my thinking. It's not that it wasn't

20:24

still difficult, but it just realizing that there

20:26

was a lot to live for. There's a lot of life out

20:28

there, and there's a lot of things that I want to

20:30

do, and I think I subconstiantly

20:33

made a decision that I was going to live

20:35

my life as fully as I could. Before

20:38

immobility happened, Cam

20:42

was still slowly losing control of her legs when

20:44

she returned to Michigan from her trip. She

20:46

quickly realized she needed to live somewhere warmer

20:49

to make her lifestyle easier. Michigan

20:51

is a lot of winters, and what

20:53

would happen is I'd fallen the ice outside

20:56

my door and just be laying there looking

20:58

up at you know, the dar guy, And I thought,

21:00

I need to get out of here. I need to go

21:03

to warm estate because I know I'm

21:05

going to get more disabled. And

21:07

I decided to move to California.

21:10

Out of the blue, Jason called and

21:12

he said, Oh, I'm in California right now.

21:14

If you want to come stay with my roommate and

21:16

I while you look for a job, that's perfectly

21:18

fine. And so that's how it started.

21:21

It's kind of funny because I

21:24

joked that when she came out here,

21:26

I was like, oh, yeah, you're looking for work, I can you

21:29

can stay with me in my roommates. But it

21:31

was secretly entrapment in

21:34

the beginning stages and coming into California,

21:36

it was a little nervous, like I didn't technically

21:38

know Jason super well. We're

21:41

friends, but you know, I'm going to go live with them,

21:43

and I'm having much difficult

21:45

time getting around and it didn't have a job,

21:48

so it was a little scary, but

21:50

it worked out. I got a job. I started working at

21:52

Mattel and you know, my whole

21:54

life in California began. After

21:57

her diagnosis, Cam was determined

21:59

to dictate her in dependence and success. She

22:01

started traveling more, moved to California

22:04

to pursue her design career, and discovered

22:06

the world of disability advocacy.

22:09

Cam learned to share her story and awareness

22:11

the best way she knew how through her design

22:13

and her art. Sometimes,

22:16

though, you know, get emotional and cry or something

22:18

like when I was drawing the piece that

22:20

was signifying my beginnings of going into a wheelchair,

22:23

you know, stuff like that, is that you're really working that out,

22:25

So it is a form of therapy for yourself. They

22:28

say, picture's it worth a thousand words,

22:30

And I think Cam really maximized

22:33

that ability to the fullest extent.

22:35

But yeah, she still gets recognized to this

22:38

day for her arts, and I still

22:40

see comments on our posts and social

22:43

media just saying like, yeah, that's exactly

22:45

what I'm experiencing, what I'm feeling, or I never

22:47

even thought of the think of it that way.

22:49

Cam uses her art to process and reflect

22:52

on her journey. Her art is beautiful

22:55

and emotionally evocative, so much

22:57

so that she's gained a significant following

23:00

community which resonates with

23:02

the new experience of Cam's story,

23:04

including Dr Corb. One

23:06

of the other ones that caught my eye when I was looking

23:08

through her gallery this week was one

23:11

where she's kind of behind these bars.

23:14

She's more of like the head and she's using

23:17

puppet strings to manipulate her limbs

23:19

which are just disembodied, you

23:21

know, legs and arms that are kind of in the

23:23

foreground of the picture, and it says

23:26

in another place in the land, far away, she

23:28

was able to move her limbs just with the pull

23:30

off a string, and I thought that was

23:33

really powerful way of looking at it. And

23:35

it's hard for us, if we're not affected

23:38

with those symptoms, to understand what it feels

23:40

like for them on that side. I

23:42

have seen those comments as well in social media

23:44

that other people pick up and it's like, Hey, this is possible.

23:47

I don't have to withhold this from myself. I can't

23:49

do this. Cam's openness

23:51

to share her story with other people through both

23:54

her art and her warm spirit, has

23:56

led her to become a speaker for different advocacy

23:58

groups around the world, in particular

24:00

g n E myopathy patient groups. There's

24:03

patients in Japan as well. They

24:06

had heard about Kim and

24:08

so they had invited her over to kind

24:11

of consult her on how

24:13

to start a patient advocate group. So

24:15

we went over and we talked with

24:17

them and we had a great time, and they showed us around

24:19

and I was like, what better time

24:22

than now to uh, you

24:24

know, do something unique and proposed

24:26

to her. Buoyed by Jason's

24:28

unwavering support and the hopes

24:30

that sharing her story might help

24:32

others navigating their own struggles, Km's

24:35

outlets through art and advocacy

24:37

address the visceral reality of living

24:40

at the mercy of her condition. Jason

24:43

and Cam are now working through how to live with

24:45

the constantly changing nature of g n

24:47

E myopathy. I'm an

24:49

artist. I need my hands. So that's

24:51

kind of been illuming shadow that

24:54

Okay, this is another thing I'm gonna lose. Wow.

24:57

So the grieving process

25:00

has become something that

25:02

you've had to look at as almost

25:05

a marathon. Yes, it

25:07

feels like it never ends, and

25:09

you get adjusted to one stage and

25:12

then another one comes up. You're like, Okay, I can deal with this

25:14

level of progression. For me at the stage,

25:17

it's the same thing I say every year. If it could

25:19

just stop right here, I'd be I'd be fine with it.

25:21

I don't mind being disabled. I'm very

25:23

used to it now and I think it's brought a lot of perspective

25:26

an interesting way of living. But

25:29

I'm constantly like I

25:31

just wish it would stop right here. I wish it would stop

25:33

taking more, because that's the difficulty

25:36

is once you adjust to a new level, then

25:39

another loss happens, so you have to go through the whole

25:41

process of good. I think when we

25:43

learned about it, like what the full diagnosis

25:46

was, and you hear the words like complete

25:49

immobility, like you have an idea

25:51

what that means. It's kind of an abstract

25:53

concept at that time. My initial

25:56

reaction was like, oh, like, oh my god,

25:58

and then I felt really bad ad

26:01

for what Cam was going to have to go up against. There's

26:03

a lot of negatively associated with it, but my

26:06

initial reaction was because we have been

26:08

together for a while and I was invested. It

26:10

was like, well, it's terrible, but

26:13

I'm glad that I'll be able to at least be able to

26:15

be here for him.

26:18

Cam has been on a long, arduous journey to understand

26:20

what was happening to her, fighting against

26:22

misdiagnoses and internal gas lighting

26:25

while feeling herself slowly lose control

26:27

of her body. Cam's experience has

26:29

only reinforced her fortitude to take advantage

26:31

of the opportunity she has in her life,

26:34

countering her loss of mobility with

26:36

creativity and purpose. So

26:39

even though I'm sure she feels trapped

26:41

in her body, She's not letting that stop

26:43

her. She's still active with multiple creative

26:45

outlets in terms of her writing and

26:47

her art, and you know,

26:50

speaking out for others to be able to find

26:53

their diagnosis faster, you know,

26:55

with less inconvenience. I think that's

26:57

incredible. The word heroic

27:00

is usually applied to these superhero type

27:02

characters who are invulnerable it can do anything,

27:05

but like, that's not heroic if you're

27:07

vulnerable, right, Like being heroic is

27:10

someone who is vulnerable, someone who

27:12

can be hurts, whether physically or emotionally.

27:15

I remember how difficult it was when

27:17

I was alone going through this, and

27:19

what I've realized through like fifteen years

27:21

of advocacy is everyone just wants to

27:23

feel seen, they want to

27:26

feel validated. It's very awarding

27:28

that people can feel a little

27:30

bit more whole or connected just

27:32

through the aspect of

27:35

someone else sharing their story. And

27:37

that's all I'm doing, is sharing my

27:39

story. For more

27:41

information on g n E myopathy,

27:43

go to Cure g n E m

27:46

dot org or check out the first

27:48

ever g N E myopathy Clinic at

27:51

U c Irvine's Neuromuscular Center,

27:53

led by one of Dr corbess colleagues.

27:56

My name is Camrad Lusk, and it

27:58

took me about eight years to find a diagnosis

28:01

for gn E myopathy. On

28:04

the season finale of Symptomatic, August

28:07

has been suffering since the age of five, with

28:09

symptoms which include inexplicable

28:11

sores and excruciating pain. You've

28:14

been in so much pain that you're

28:17

like, Wow, I'm

28:20

screaming, but it's not helping.

28:23

Perhaps I should stop screaming because it's

28:25

not helping. What can I do? What

28:27

can I do? There's nothing I can do. He

28:29

goes on a search for diagnosis that, even

28:32

once found, continues to provide

28:34

daunting medical challenges. Symptomatic

28:38

a Medical Mystery podcast is an

28:40

original podcast from I Heart Radio.

28:43

Are shows hosted by me Lauren Bright Pacheco.

28:45

Executive producers are Matt Romano

28:48

and myself. Our EP of post

28:50

production is James Foster. Our

28:52

producers are cra Kaiser and

28:54

John Irwin.