July 12, 2023 • 26 mins
In this special bonus episode, we’ll spotlight one of the many rare conditions that deserves more attention and resources. Chronic inflammatory demyelinating polyneuropathy, more commonly known as CIDP, is a rare neurological condition that causes progressive weakness, impaired mobility, and reduced sensation in the arms and legs. Guests, Scott and Crystal, discuss how each of their lives were drastically impacted by CIDP. When Scott, a choreographer, was diagnosed, he had to learn to channel his creativity into new mediums. While Crystal, a former pharmaceutical executive who was well-versed in rare conditions, found herself diagnosed with one. Despite their different backgrounds, they’ve both found that compassion, community, and continually engaging in proper care has taught them how to cope with the adjustments they have had to make in their lives.
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Episode Transcript
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Speaker 1 (00:03):
Hi, everyone, and welcome to the special bonus episode of
Untold Stories, a podcast from iHeartRadio in partnership with Argenics,
and I'm your host, Martine Hackett. I'm an Associate professor
and Director of Public Health Programs at Hofstra University. As
a researcher, professor, and public health expert, I've spent my
career studying the complex realities of health care disparities and
(00:24):
the barriers people face. In this podcast, I've been speaking
with people from many walks of life living with a
rare disease. In today's special episode, we'll be spotlighting another
rare type of autoimmune disorder, chronic inflammatory demielinating polyneuropathy, more
commonly known as CIDP. Our hope is that through this
podcast we're able to amplify these voices and share a
(00:47):
greater understanding of life with a rare disease. Today's bonus
episode on CIDP will expand the important conversation around this condition,
because every person with a rare disease has a unique
story to tell. For those unfamiliar, chronic inflammatory demilinating polyneuropathy
is a neurologic disorder involving symptoms of progressive weakness and
(01:09):
reduce sensation in the arms and legs. With CIDP, a
person's immune system mistakenly attacks the protective layer that surrounds nerves.
When the nerves become damaged, the body has difficulty completing
signals to the muscles, which is why people with CIDP
may experience weakness and have difficulty walking. CIDP can occur
(01:30):
at any age and affects people of all genders. However,
it's more common in adult men. Today, I'm joined by
two guests who have both had their unique journeys with CIDP.
Diagnosed in twenty fourteen, Christel knew that her life was
going to change forever and the dynamics between her and
her husband would be profoundly affected. What she didn't expect
(01:50):
is that living with CIDP would actually bring them closer together,
and her outlook on life with this rare disease would
open a vast new chapter. Similarly, our second guest today, Scott,
has been on an eight year journey with CIDP, learning
to strike a balance with his developing symptoms. As a
longtime dancer and choreographer, he has had to adapt his
(02:10):
creativity as his CIDP impacted his mobility, but with a
positive outlook and a caring support system, he is making
the artistic moves he has never dreamt of before. Let's
get started, So again, thank you so much for both
of you for agreeing to be here today, and I'm
(02:31):
so looking forward to hearing your stories. The first question
I have for both of you, Scott and Crystal, is
to get a sense of a little bit of what
your lives were like before CIDP. Crystal, can we start
with you?
Speaker 2 (02:45):
Sure?
Speaker 3 (02:46):
Absolutely.
Speaker 2 (02:46):
First, I just want to say that I'm thrilled to
be here, and I'm thrilled to be speaking about CIDP,
and I cannot thank everybody enough. But I like to
describe myself prior to CIDP as being a very cocky,
healthy person. I was diagnosed at fifty five, and I
was healthy. I was eating the way they tell you
to eat, maybe had a drink once a week. I
(03:09):
was working for FORMA, I had gone back to college
and I was working on my second degree. I was
a type of woman that would run first thing in
the morning before work, and then CIDP hit and it
was like hitting the wall at one hundred miles an hour.
Speaker 1 (03:24):
Wow, and we'll definitely hear more about that in a
minute after we hear from Scott. Scott, will you tell
me what would your life look like before CIDP?
Speaker 4 (03:32):
For me, I grew up as a professional entertainer from
the age of eight years old, mostly musical theater. I
did some off Broadway stuff. I came back, I planted
myself at a theme park and did ten years stint
for them. And at the same time I was directing
in choreographing, and in two thousand and seven I opened
my own professional company. And also I was teaching for
(03:53):
Florida Southern College. So I was incredibly active. My body
was in perfect shape. I had kept it that way
even at fifty six years old. And then this happened,
just like Crystal said, and it was like hitting a
wall one hundred miles an hour. It took me two
neurologists actually onto a third team of people to figure
(04:13):
out what this was and give me a diagnosis.
Speaker 1 (04:16):
So when did you first start to notice symptoms and
when did you start to realize it was something serious?
And how did you ultimately get that diagnosis? So Crystal,
to start with you, as.
Speaker 2 (04:25):
I said, I was a runner and my first symptoms
were that I realized hills and even small inclines were
giving me trouble. But again, you don't think, gee, there's
something wrong. I just thought I'm not training hard enough.
I'm getting older. I was fifty five at the time. Also,
my memory, my memory at work started going, and again
(04:48):
I thought, maybe I'm getting tired of my job. Maybe
I'm just getting bored. And then I started get tingling
in my top lip. I have a very rare form
of CIDP. I present from the top down as opposed
from the extremities up. So I have a rare form
of a rare disease. But it's again, it started my
(05:09):
top lip, then it spread to my bottom lip. Then
it spread to my face. And when I would eat,
I would literally bite my tongue because I could not
feel my tongue. We had a dog at the time, Scott,
you'll appreciate this. My dog's name was Broadway, because that's
how much we love musical theater. That isn't that funny.
(05:30):
But I was giving Broadway a bath in the tub,
and after we finished, he got out and I could
not get up, and I had to push myself up
off the floor and hang onto the toilet, and again
thinking that's interesting, not that there's anything wrong, and my
symptoms were getting progressively worse. I was getting weakness, and
(05:51):
my husband suggested that I go see a neurologists, and
I thought, for what tingling? It didn't occur to me
that that was anything wrong, but that's how it presented
with me.
Speaker 1 (06:01):
And how about you, Scott.
Speaker 5 (06:03):
It started in my feet.
Speaker 4 (06:05):
We were actually auditioning for a show, and I felt
tingling afterwards, and I thought, oh, I just put some
pressure on myself and you know it'll go away. And suddenly,
over time during that particular show, being on my feet
all the time, teaching and choreographing and all that, it
remained and it wasn't going anywhere.
Speaker 5 (06:22):
Now.
Speaker 4 (06:23):
About five years prior to that, I had ended up
having a complete hip replacement because of a major injury,
which took me off my feet as an entertainer, but
of course I could still be a choreographer. So I
went back to my surgeon. I said, this is gonna
be funny.
Speaker 5 (06:36):
Did you leave something inside of me that's making this happen?
Speaker 4 (06:41):
And he did all these tests and he came back
and said one hundred percent. This has nothing to do
with your hip replacement. You need to see a neurologist.
I'm like, just like, Crystal, oh what, I don't even
know what that meant.
Speaker 5 (06:55):
And so I.
Speaker 4 (06:55):
Went and through two different neurologists that did not do
anything for me. And part of this was because it's
not on their radar. This is so rare. Even neurologists
can miss it because they don't deal with it. One
of them told me I had carpal tunnel and then
tried to shove me full of drugs, and the other one, well,
(07:17):
at the very end, said well, I think you have CIDP.
You probably should go.
Speaker 5 (07:21):
Home and google that, and that's how I found out.
Speaker 1 (07:25):
Wow, and Crystal, can you also tell us how you
ultimately found out your diagnosis?
Speaker 2 (07:30):
Well, Scott, I feel kind of bad because I got
diagnosed very quickly by my first neurologist. When I first
started to mention my symptoms, he said to me, it's
either MMn or CIDP is multifocal motor neuropathy, which is
kind of a sister of CIDP, so he kind of
(07:51):
knew in the beginning. And then they did an EMG
test immediately and that showed that it had a delay
in my response of the nerves to the brain, and
then it was off to the races from there.
Speaker 3 (08:02):
But I was very lucky.
Speaker 2 (08:04):
It was I think June were my first symptoms and
I was in the hospital getting ibig by September and
that's rare.
Speaker 3 (08:12):
I know that that's rare.
Speaker 1 (08:14):
And so Scott, after googling it, I guess that's when
you found out that that's what you had.
Speaker 4 (08:18):
Yes, I had that, and then I didn't know what
to do because I swore I wasn't going back to
this guy. And then suddenly I discovered the GBS and
CIDP International Foundation, and at the bottom of that list
was Tampa, which is an hour and a half away
from me. The USF Health Campus handles this and does
(08:41):
major research in it.
Speaker 5 (08:42):
So I called and I said.
Speaker 4 (08:44):
I need help. I've been doing this for two years.
And they got me in like that, and the next
thing I know, I have a team of five people
taking care of me for the last eight years.
Speaker 5 (08:54):
And it's wonderful.
Speaker 1 (08:55):
What a difference just to kind of find that match
right huge Between that and so CIDP primarily affects the
limbs and movement and has a serious impact on people's
daily life. Can you talk about how it was affecting
you personally and or professionally, and also what adjustments you've
had to make to manage living with your symptoms. So Crystal,
(09:17):
can we start with you.
Speaker 2 (09:19):
It changed every single aspect of my life. I had
to stop working. I had to go off on disability.
I haven't worked since twenty fourteen. And as I said,
I had been back in college. I had to stop that.
But a little fist forward here, I did go back
and I graduated a year ago with my second degree.
So there is oh hang on, I have a wonderful husband,
(09:41):
thank goodness. But it changed our lives. You know, you
don't know when you wake up in the morning how
you're going to feel. So in the beginning, we learned,
we made reservations, we've bought tickets, and then I wake
up and I can't go. So it's really changed our
social life. It's changed what we do on a daily basis.
(10:02):
It's changed how I feel about myself in terms of
being a productive member of society. You know, you kind
of get to know yourself as a quote unquote sick person.
And I hate using that, but there's kind of no
other way to describe it when you have a chronic illness,
especially the ones that we have, Scott. Right, Like, if
people were to look at us like too bid, they
can't see us because we look fantastic, but fine.
Speaker 3 (10:25):
Right, we do you look?
Speaker 2 (10:27):
Nobody's going to say, right, So they look at you
and they go, it can't possibly be anything wrong with you.
But they don't see the pain. They don't see the fasciculations,
they don't see the muscle spasms, right, they don't see
the numbness or the tangling or anything in your life.
I've lost friends. I've had friends tell me that can't
be that bad. You must be faking it.
Speaker 4 (10:48):
That is the weirdest thing. I lost friends too, like
a handful all at once.
Speaker 5 (10:53):
It was so weird.
Speaker 2 (10:55):
Yeah, but you know what, I find that when you
have a chronic illness, it really shows you who your
true friends are. My circle may be smaller now, but
it's better.
Speaker 1 (11:06):
Thank you Crystal for sharing that. Scott, how about you.
Speaker 4 (11:10):
I'm shaking my head over here and nobody can see that,
but I am agreeing with absolutely everything the Crystal just said.
It changes every single aspect of your life and like
she said, you would look at us and never know
that anything's wrong. Now with me, my CIDP came from
the feet up and I have now pretty much lost
(11:31):
even the ability to walk. I can'n out drive anymore.
I have a power wheelchair standing by waiting. I'm on serious,
serious drugs. They're pushing me to an opioid two to
stop the pain. Now, that is part of your life,
taking care of yourself. It is a full time job.
All of a sudden, you're either filling pill boxes, you're
(11:52):
taking the pills. You're trying to figure out how to
get out of bed, crawling to the coffee because it's
not a good morning, praying in four hours.
Speaker 5 (11:59):
This will stop because you have things you want to do.
Speaker 2 (12:02):
That's very interesting, Scott, because I walk with a walker
if it's distance, I have a manual wheelchair, but I
keep my electric reelchair because I don't know, and I
don't believe that that's being negative. I think that we
have to be realistic.
Speaker 4 (12:17):
Well realistic. And also what my doctors and I talked about.
One thing about my CIDP is I have had it
non stop every single day since they diagnosed it, and
they cannot stop the progression. The game of CIDP is
to find out what mix of drugs and medications can
stop at the progression.
Speaker 5 (12:38):
Never be able to cure it, but stop it.
Speaker 4 (12:40):
I have become this anomaly to them because they cannot
figure out for one second how to make it stop.
And so every year I gain five to ten percent
disability do to math. I'm only fifty six. So the
big talk now has been how do we preserve your
quality of life and make things good for you?
Speaker 5 (13:02):
How do we work on that? And if that means a.
Speaker 4 (13:04):
Chair, if that means a disability tag, if that means whatever,
what are you going to do? You got to do that,
and hopefully your support circle is right behind you pushing
that wheelchair if they have to.
Speaker 1 (13:22):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune diseases, our Genics is
dedicated to partnering with advocacy organizations, including the GBS CIDP
(13:43):
Foundation International, in support of the CIDP community. The GBS
CIDP Foundation International is a global nonprofit organization with a
vision to ensure that every person affected by chronic inflammatory
demilinating polyneuropathyon Berat syndrome or related syndromes has access to
early and accurate diagnosis, appropriate treatment, and knowledgeable support services.
(14:08):
Their mission to improve the quality of life for individuals
and families affected by these conditions focuses on four pillars,
supporting patients, educating healthcare professionals and caregivers, funding research, and
advocating to help policymakers make informed decisions that benefit this
patient community. For more information about gbs CIDP Foundation International,
(14:31):
visit www dot GBSHCIDP dot org. And now back to
untold stories. Obviously, people with CIDP sometimes find themselves struggling
(14:52):
with the emotional toll. So how have you both been
able to sort of maintain your mental health while managing
the physical effects of your crystal.
Speaker 3 (15:02):
It's interesting.
Speaker 2 (15:02):
I have never had anxiety and depression prior to see IDP.
I had a terrible flare at the beginning of April.
I couldn't walk again and wound up in the hospital,
and I was extremely depressed. I thought, I can't do
this again. I can't do this again, but I ask
for help. I told him in the hospital I have
(15:23):
a therapist that I talk with once a week, and
I beg anybody in our community who is suffering, don't
suffer in silence. It is so not worth it because
sometimes with physical I feel like you can get through it.
But if you don't have the mental space in order
to say, yes, I'm going to fight this, I want
(15:43):
to get through it, then everything just becomes a vicious cycle.
You feel like you're in a trench and you can't
get up.
Speaker 1 (15:51):
Thank you so much for sharing that, Scott, What about you?
Speaker 5 (15:55):
I agree with Crystal one.
Speaker 4 (15:57):
First of all, if you're feeling dark, please reach out
to somebody, anybody.
Speaker 5 (16:02):
Now.
Speaker 4 (16:02):
I was the type of person that was in theater,
was proud of my performance.
Speaker 5 (16:08):
I was very forward.
Speaker 4 (16:09):
You know.
Speaker 5 (16:10):
I just loved myself.
Speaker 4 (16:11):
I guess because I'd done it so long and I
did it so good, and all of a sudden, like Crystal,
there was a dark moment and I can't even remember
what it was about. All I did was I contacted
my doctor so fast. I said, you have got to
do something, please just help me, and they gave me
a very light drug that took the cloud off of me.
(16:33):
And the other thing for me was I started to pray.
That was a good thing for me. It just helps
me to meditate and to pull in center. But it's real.
There is no longer a normal. Every day is your
new normal. It's like a merry go round that's going
really really fast and you cannot get off. I feel
(16:54):
we've had to reinvent ourselves, right, Crystal. Oh, yes, Like
for me at the end of the day, choreographer, dancer,
all of that business. I'm a storyteller. That's what I do.
So what am I going to do now? I don't
know if it was God or the universe or something
bashed me on the head last July and said You're
going to be a writer. And that's what I've done.
(17:15):
I'm working on two novels. Three of my short stories
have been picked up for publishing. You find things to
change in your life, Scott.
Speaker 2 (17:24):
I can't believe you just said what you said, because
when I was in the hospital for six months, I had,
you know, physical therapists. I had an occupational therapist and
I had a recreational therapist, and the recreational therapist said,
do you want to paint? I said, I can't paint, right,
I've never painted in my life. Guess what I can paint?
I see me so the point where I'm pretty good,
(17:47):
if I have to say so myself.
Speaker 3 (17:49):
I've sold some paintings.
Speaker 2 (17:51):
I mean, you know, my hands are not great, but
I'm able to figure out a way to do it.
And when I do it, I don't feel the pain,
I don't feel the symptoms. I'm right in it exactly.
It's almost like meditating for me, Scott. There will be
something you don't know what it is. It could be
prayer for somebody, if people are not religious who were listening,
(18:12):
it could be meditation. But it could even be if
you can get outside and sit outside and look up
at the sky, that's meditation. Anything that takes you out
of the moment is very very helpful.
Speaker 4 (18:25):
I agree there's something about the mentality, because if you're
sitting around doing nothing but being in pain, you're going
to be in pain and your life is not going
to be very good.
Speaker 1 (18:34):
Right.
Speaker 4 (18:35):
The number one thing that happened to me was to
embrace this, not run. Embrace And I use this word
everywhere I go, even on myself.
Speaker 5 (18:46):
And it happened.
Speaker 4 (18:48):
I had a disabled parking tag to put on your
car for two years and I would.
Speaker 5 (18:53):
Not use it.
Speaker 4 (18:54):
And one day I couldn't do it anymore, and I
pulled up and I said, there's an empty spot, and
I put the tag on. I looked at myself and
I'm crying in the mirror, and all I said was embrace, Embrace, embrace,
get out of the car.
Speaker 5 (19:06):
And that's how it started.
Speaker 4 (19:08):
And so once you can do that and bring it
in and say this is part of me, this is
part of my life. Now I have to deal with it.
I have to grow with this thing, then you'll be okay.
Speaker 3 (19:20):
Right. I like to call it radical acceptance beautiful.
Speaker 1 (19:24):
How would you say that living with a rare disease
like CIDP change your outlook or approach on life. Have
there been moments of connection or strength that have come
through your journey?
Speaker 2 (19:35):
Yes, I think again it's the yin and yang of it.
I joke that every time I'm able to get to
the bathroom by myself, I have a thank you Jesus moment. Right,
It's like it sounds like a small deal, but it's not.
If you could take a shower by yourself, it's a
big deal. So I appreciate those things. I always was
very appreciative of life and a beautiful day in the
(19:59):
beach and that kind of thing. And I still am
that part of Crystal is still in there. I'm able
to find joy. I want to stress that, so I
believe that if you'll look for it. I think maybe
those of us with this have to kind of look
a little bit harder for those moments. But they are moments,
and you know what, that's all we have, right, We've
(20:20):
all just been through this terrible pandemic.
Speaker 3 (20:23):
I don't know about you, Scott leave the house for
eighteen months.
Speaker 5 (20:26):
Thank you?
Speaker 2 (20:27):
Right?
Speaker 5 (20:27):
Doctor said no, no.
Speaker 3 (20:29):
No, I was on immunosuppressence. I could not leave the.
Speaker 4 (20:31):
House exactly the same story, don't leave the house until
we say.
Speaker 3 (20:35):
So, right.
Speaker 2 (20:36):
But unfortunately, when you have a chronic illness, I called
myself a pandemic pro because there are a lot of
times when I'm in the house a lot, because sometimes
it's a little bit easier to isolate. I know that
may sound a little bit bizarre, because you crave human
contact and you crave going out or whatever, but sometimes
it could just be so difficult. It takes so much
(20:57):
out of you that it's almost easier to isolate.
Speaker 3 (21:01):
You know. I did want to.
Speaker 2 (21:02):
Make a point though, in terms of support, I've written
down a few places where I go to for support,
and I'm sure Scott maybe you have done them as well.
The GBSCIITB Foundation International. They have a great website. They
have a great organization that can guide you to Like Scott,
you found that Center of Excellence that's on their website
(21:23):
as well, and you can connect with other people who
also have the same disease that you have. I also
belong to the Rare Action Network, which is a great
online venue and sometimes they'll even have a study or
something that you might qualify for. I belong to NORD,
the National Organization of Rare Disorders. That's also another one.
(21:47):
I want to mention Clinicaltrials dot gov. And last, but
not least, I do want to mention ARDSINX, which I
know is sponsoring this podcast, but they have a website
called we Hear You CIDP dot com. I cannot believe
I have not known about this. It is patient stories
and all different points in their healing. But to be
(22:11):
able to get on that website and to be able
to read about other patient's story is phenomenal. So for
anybody who needs a little bit of extra. All these
websites that I've mentioned are.
Speaker 1 (22:21):
Wonderful, wonderful, and finally, Scott, any advice or message of
hope to give someone who's been newly diagnosed with this disorder.
Speaker 4 (22:28):
The big thing for me is been this embrace thing
is to really bring it in, to really get educated.
There's another big word we really should throw out there,
get educated. You know, when I've got a doctor telling
me to go home and google it, there is something wrong.
Speaker 5 (22:44):
He wasn't educated.
Speaker 4 (22:46):
But when I went to my Tampa team, I got
so much stuff in my hand and they told me
all those places that Crystal just mentioned to go. There
is another one called Rare Patient Voices. Is that the
same thing, Crystal?
Speaker 3 (22:57):
No, that's another one.
Speaker 4 (22:58):
Yeah, yeah, you can get involved with them under Rare
Patient Voices.
Speaker 5 (23:02):
Just look it up.
Speaker 4 (23:03):
That's about people needing to get it out there from
the people who have it. So those are the things
that I think are my big takeaway hopefully from this
podcast today is the embracing factor for yourself and for
anybody that's listening, not just the person who has the CIDP,
anybody that's listening. Remember, we're people and we want to
(23:25):
be treated like human beings. And we want you to
understand us because, like Crystal said, you see me hobbling
down the street, you'd barely know anything.
Speaker 5 (23:34):
Was wrong with me.
Speaker 1 (23:35):
Right, wonderful. So I think that's all I have for you.
And I think that this leaves us with such great
information and hope and insight, like you said, Scott, to
understand what it's like to be a human being with
this disease, not a disease that happened to a human being, right.
Speaker 5 (23:51):
I mean I hear this all the time. I'm not
defined by my disease, and I'm not.
Speaker 4 (23:55):
Nobody is. I can tell Crystal's not, you know. And
the more we do this spreads and spreads and spreads
and spreads. That's why it's important to get hooked up
with people come to the podcast, go online and become
part of the GBS at CIDP International Foundation, and it
just keeps rolling and all of a sudden, people go,
I know what that's about.
Speaker 1 (24:14):
I've heard about that, right.
Speaker 4 (24:17):
Part of that helps us with research, yes, so that
people get get excited about fronting research. The other thing
that's hard for research, there's very few of us out there.
Speaker 1 (24:28):
Of course, yeah.
Speaker 2 (24:29):
I do want to just leave people with this that
wherever you are right now in your CIDP journey, you
won't stay there. There's always a change, so don't get
so hung up. You know, I can't do this. I
did this yesterday. I can't do it today. You'll do
it again tomorrow. You won't stay there. I also want
to thank the caregivers who are our lifeline. I want
(24:50):
to thank all the pharmaceutical companies that are trying to
come up with new treatments and therapies for us. I
cannot thank everybody enough. And to the people who perhaps
are listening to this podcast who don't have CIDP all right,
maybe they're just tuning in. Be grateful. Be grateful for
a day where you're not in pain, or a day
(25:11):
where you could walk across the street you don't need help.
Be grateful for a boring day, oh I have to
get up and go to work today. Be grateful because
you never know.
Speaker 1 (25:21):
And I am grateful for both of you giving up
your time today and sharing your stories. Thank you so much,
Thank you, Martine, thank you, thank you so much to
Krystal and Scott, who are both so gracious and vulnerable,
while sharing their experiences. As with many rare diseases, CIDP
(25:43):
is not a very well known condition, so I'm grateful
to them for their willingness to share their stories and
beautiful outlook on life. Understanding more about autoimmune conditions has
really helped expand my understanding of these unique life experiences
through each powerful and unique personal journey. Tune in next
week to continue with another one of our regularly scheduled
(26:04):
episodes of Untold Stories. Life with my Asthenia Gravis. Untold
Stories was produced by iHeartRadio in partnership with ARGENICX and
Closer Look, and hosted by me Martine Hackett. Our executive
producer is Mali Sosha, our EP of Post Production is
Matt Stillo, and our producer is Sierra Kaiser. This episode
(26:26):
was edited by Sierra Spreen and written and produced by
Tyree Rush
Hi, everyone, and welcome to the special bonus episode of
Untold Stories, a podcast from iHeartRadio in partnership with Argenics,
and I'm your host, Martine Hackett. I'm an Associate professor
and Director of Public Health Programs at Hofstra University. As
a researcher, professor, and public health expert, I've spent my
career studying the complex realities of health care disparities and
(00:24):
the barriers people face. In this podcast, I've been speaking
with people from many walks of life living with a
rare disease. In today's special episode, we'll be spotlighting another
rare type of autoimmune disorder, chronic inflammatory demielinating polyneuropathy, more
commonly known as CIDP. Our hope is that through this
podcast we're able to amplify these voices and share a
(00:47):
greater understanding of life with a rare disease. Today's bonus
episode on CIDP will expand the important conversation around this condition,
because every person with a rare disease has a unique
story to tell. For those unfamiliar, chronic inflammatory demilinating polyneuropathy
is a neurologic disorder involving symptoms of progressive weakness and
(01:09):
reduce sensation in the arms and legs. With CIDP, a
person's immune system mistakenly attacks the protective layer that surrounds nerves.
When the nerves become damaged, the body has difficulty completing
signals to the muscles, which is why people with CIDP
may experience weakness and have difficulty walking. CIDP can occur
(01:30):
at any age and affects people of all genders. However,
it's more common in adult men. Today, I'm joined by
two guests who have both had their unique journeys with CIDP.
Diagnosed in twenty fourteen, Christel knew that her life was
going to change forever and the dynamics between her and
her husband would be profoundly affected. What she didn't expect
(01:50):
is that living with CIDP would actually bring them closer together,
and her outlook on life with this rare disease would
open a vast new chapter. Similarly, our second guest today, Scott,
has been on an eight year journey with CIDP, learning
to strike a balance with his developing symptoms. As a
longtime dancer and choreographer, he has had to adapt his
(02:10):
creativity as his CIDP impacted his mobility, but with a
positive outlook and a caring support system, he is making
the artistic moves he has never dreamt of before. Let's
get started, So again, thank you so much for both
of you for agreeing to be here today, and I'm
(02:31):
so looking forward to hearing your stories. The first question
I have for both of you, Scott and Crystal, is
to get a sense of a little bit of what
your lives were like before CIDP. Crystal, can we start
with you?
Speaker 2 (02:45):
Sure?
Speaker 3 (02:46):
Absolutely.
Speaker 2 (02:46):
First, I just want to say that I'm thrilled to
be here, and I'm thrilled to be speaking about CIDP,
and I cannot thank everybody enough. But I like to
describe myself prior to CIDP as being a very cocky,
healthy person. I was diagnosed at fifty five, and I
was healthy. I was eating the way they tell you
to eat, maybe had a drink once a week. I
(03:09):
was working for FORMA, I had gone back to college
and I was working on my second degree. I was
a type of woman that would run first thing in
the morning before work, and then CIDP hit and it
was like hitting the wall at one hundred miles an hour.
Speaker 1 (03:24):
Wow, and we'll definitely hear more about that in a
minute after we hear from Scott. Scott, will you tell
me what would your life look like before CIDP?
Speaker 4 (03:32):
For me, I grew up as a professional entertainer from
the age of eight years old, mostly musical theater. I
did some off Broadway stuff. I came back, I planted
myself at a theme park and did ten years stint
for them. And at the same time I was directing
in choreographing, and in two thousand and seven I opened
my own professional company. And also I was teaching for
(03:53):
Florida Southern College. So I was incredibly active. My body
was in perfect shape. I had kept it that way
even at fifty six years old. And then this happened,
just like Crystal said, and it was like hitting a
wall one hundred miles an hour. It took me two
neurologists actually onto a third team of people to figure
(04:13):
out what this was and give me a diagnosis.
Speaker 1 (04:16):
So when did you first start to notice symptoms and
when did you start to realize it was something serious?
And how did you ultimately get that diagnosis? So Crystal,
to start with you, as.
Speaker 2 (04:25):
I said, I was a runner and my first symptoms
were that I realized hills and even small inclines were
giving me trouble. But again, you don't think, gee, there's
something wrong. I just thought I'm not training hard enough.
I'm getting older. I was fifty five at the time. Also,
my memory, my memory at work started going, and again
(04:48):
I thought, maybe I'm getting tired of my job. Maybe
I'm just getting bored. And then I started get tingling
in my top lip. I have a very rare form
of CIDP. I present from the top down as opposed
from the extremities up. So I have a rare form
of a rare disease. But it's again, it started my
(05:09):
top lip, then it spread to my bottom lip. Then
it spread to my face. And when I would eat,
I would literally bite my tongue because I could not
feel my tongue. We had a dog at the time, Scott,
you'll appreciate this. My dog's name was Broadway, because that's
how much we love musical theater. That isn't that funny.
(05:30):
But I was giving Broadway a bath in the tub,
and after we finished, he got out and I could
not get up, and I had to push myself up
off the floor and hang onto the toilet, and again
thinking that's interesting, not that there's anything wrong, and my
symptoms were getting progressively worse. I was getting weakness, and
(05:51):
my husband suggested that I go see a neurologists, and
I thought, for what tingling? It didn't occur to me
that that was anything wrong, but that's how it presented
with me.
Speaker 1 (06:01):
And how about you, Scott.
Speaker 5 (06:03):
It started in my feet.
Speaker 4 (06:05):
We were actually auditioning for a show, and I felt
tingling afterwards, and I thought, oh, I just put some
pressure on myself and you know it'll go away. And suddenly,
over time during that particular show, being on my feet
all the time, teaching and choreographing and all that, it
remained and it wasn't going anywhere.
Speaker 5 (06:22):
Now.
Speaker 4 (06:23):
About five years prior to that, I had ended up
having a complete hip replacement because of a major injury,
which took me off my feet as an entertainer, but
of course I could still be a choreographer. So I
went back to my surgeon. I said, this is gonna
be funny.
Speaker 5 (06:36):
Did you leave something inside of me that's making this happen?
Speaker 4 (06:41):
And he did all these tests and he came back
and said one hundred percent. This has nothing to do
with your hip replacement. You need to see a neurologist.
I'm like, just like, Crystal, oh what, I don't even
know what that meant.
Speaker 5 (06:55):
And so I.
Speaker 4 (06:55):
Went and through two different neurologists that did not do
anything for me. And part of this was because it's
not on their radar. This is so rare. Even neurologists
can miss it because they don't deal with it. One
of them told me I had carpal tunnel and then
tried to shove me full of drugs, and the other one, well,
(07:17):
at the very end, said well, I think you have CIDP.
You probably should go.
Speaker 5 (07:21):
Home and google that, and that's how I found out.
Speaker 1 (07:25):
Wow, and Crystal, can you also tell us how you
ultimately found out your diagnosis?
Speaker 2 (07:30):
Well, Scott, I feel kind of bad because I got
diagnosed very quickly by my first neurologist. When I first
started to mention my symptoms, he said to me, it's
either MMn or CIDP is multifocal motor neuropathy, which is
kind of a sister of CIDP, so he kind of
(07:51):
knew in the beginning. And then they did an EMG
test immediately and that showed that it had a delay
in my response of the nerves to the brain, and
then it was off to the races from there.
Speaker 3 (08:02):
But I was very lucky.
Speaker 2 (08:04):
It was I think June were my first symptoms and
I was in the hospital getting ibig by September and
that's rare.
Speaker 3 (08:12):
I know that that's rare.
Speaker 1 (08:14):
And so Scott, after googling it, I guess that's when
you found out that that's what you had.
Speaker 4 (08:18):
Yes, I had that, and then I didn't know what
to do because I swore I wasn't going back to
this guy. And then suddenly I discovered the GBS and
CIDP International Foundation, and at the bottom of that list
was Tampa, which is an hour and a half away
from me. The USF Health Campus handles this and does
(08:41):
major research in it.
Speaker 5 (08:42):
So I called and I said.
Speaker 4 (08:44):
I need help. I've been doing this for two years.
And they got me in like that, and the next
thing I know, I have a team of five people
taking care of me for the last eight years.
Speaker 5 (08:54):
And it's wonderful.
Speaker 1 (08:55):
What a difference just to kind of find that match
right huge Between that and so CIDP primarily affects the
limbs and movement and has a serious impact on people's
daily life. Can you talk about how it was affecting
you personally and or professionally, and also what adjustments you've
had to make to manage living with your symptoms. So Crystal,
(09:17):
can we start with you.
Speaker 2 (09:19):
It changed every single aspect of my life. I had
to stop working. I had to go off on disability.
I haven't worked since twenty fourteen. And as I said,
I had been back in college. I had to stop that.
But a little fist forward here, I did go back
and I graduated a year ago with my second degree.
So there is oh hang on, I have a wonderful husband,
(09:41):
thank goodness. But it changed our lives. You know, you
don't know when you wake up in the morning how
you're going to feel. So in the beginning, we learned,
we made reservations, we've bought tickets, and then I wake
up and I can't go. So it's really changed our
social life. It's changed what we do on a daily basis.
(10:02):
It's changed how I feel about myself in terms of
being a productive member of society. You know, you kind
of get to know yourself as a quote unquote sick person.
And I hate using that, but there's kind of no
other way to describe it when you have a chronic illness,
especially the ones that we have, Scott. Right, Like, if
people were to look at us like too bid, they
can't see us because we look fantastic, but fine.
Speaker 3 (10:25):
Right, we do you look?
Speaker 2 (10:27):
Nobody's going to say, right, So they look at you
and they go, it can't possibly be anything wrong with you.
But they don't see the pain. They don't see the fasciculations,
they don't see the muscle spasms, right, they don't see
the numbness or the tangling or anything in your life.
I've lost friends. I've had friends tell me that can't
be that bad. You must be faking it.
Speaker 4 (10:48):
That is the weirdest thing. I lost friends too, like
a handful all at once.
Speaker 5 (10:53):
It was so weird.
Speaker 2 (10:55):
Yeah, but you know what, I find that when you
have a chronic illness, it really shows you who your
true friends are. My circle may be smaller now, but
it's better.
Speaker 1 (11:06):
Thank you Crystal for sharing that. Scott, how about you.
Speaker 4 (11:10):
I'm shaking my head over here and nobody can see that,
but I am agreeing with absolutely everything the Crystal just said.
It changes every single aspect of your life and like
she said, you would look at us and never know
that anything's wrong. Now with me, my CIDP came from
the feet up and I have now pretty much lost
(11:31):
even the ability to walk. I can'n out drive anymore.
I have a power wheelchair standing by waiting. I'm on serious,
serious drugs. They're pushing me to an opioid two to
stop the pain. Now, that is part of your life,
taking care of yourself. It is a full time job.
All of a sudden, you're either filling pill boxes, you're
(11:52):
taking the pills. You're trying to figure out how to
get out of bed, crawling to the coffee because it's
not a good morning, praying in four hours.
Speaker 5 (11:59):
This will stop because you have things you want to do.
Speaker 2 (12:02):
That's very interesting, Scott, because I walk with a walker
if it's distance, I have a manual wheelchair, but I
keep my electric reelchair because I don't know, and I
don't believe that that's being negative. I think that we
have to be realistic.
Speaker 4 (12:17):
Well realistic. And also what my doctors and I talked about.
One thing about my CIDP is I have had it
non stop every single day since they diagnosed it, and
they cannot stop the progression. The game of CIDP is
to find out what mix of drugs and medications can
stop at the progression.
Speaker 5 (12:38):
Never be able to cure it, but stop it.
Speaker 4 (12:40):
I have become this anomaly to them because they cannot
figure out for one second how to make it stop.
And so every year I gain five to ten percent
disability do to math. I'm only fifty six. So the
big talk now has been how do we preserve your
quality of life and make things good for you?
Speaker 5 (13:02):
How do we work on that? And if that means a.
Speaker 4 (13:04):
Chair, if that means a disability tag, if that means whatever,
what are you going to do? You got to do that,
and hopefully your support circle is right behind you pushing
that wheelchair if they have to.
Speaker 1 (13:22):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune diseases, our Genics is
dedicated to partnering with advocacy organizations, including the GBS CIDP
(13:43):
Foundation International, in support of the CIDP community. The GBS
CIDP Foundation International is a global nonprofit organization with a
vision to ensure that every person affected by chronic inflammatory
demilinating polyneuropathyon Berat syndrome or related syndromes has access to
early and accurate diagnosis, appropriate treatment, and knowledgeable support services.
(14:08):
Their mission to improve the quality of life for individuals
and families affected by these conditions focuses on four pillars,
supporting patients, educating healthcare professionals and caregivers, funding research, and
advocating to help policymakers make informed decisions that benefit this
patient community. For more information about gbs CIDP Foundation International,
(14:31):
visit www dot GBSHCIDP dot org. And now back to
untold stories. Obviously, people with CIDP sometimes find themselves struggling
(14:52):
with the emotional toll. So how have you both been
able to sort of maintain your mental health while managing
the physical effects of your crystal.
Speaker 3 (15:02):
It's interesting.
Speaker 2 (15:02):
I have never had anxiety and depression prior to see IDP.
I had a terrible flare at the beginning of April.
I couldn't walk again and wound up in the hospital,
and I was extremely depressed. I thought, I can't do
this again. I can't do this again, but I ask
for help. I told him in the hospital I have
(15:23):
a therapist that I talk with once a week, and
I beg anybody in our community who is suffering, don't
suffer in silence. It is so not worth it because
sometimes with physical I feel like you can get through it.
But if you don't have the mental space in order
to say, yes, I'm going to fight this, I want
(15:43):
to get through it, then everything just becomes a vicious cycle.
You feel like you're in a trench and you can't
get up.
Speaker 1 (15:51):
Thank you so much for sharing that, Scott, What about you?
Speaker 5 (15:55):
I agree with Crystal one.
Speaker 4 (15:57):
First of all, if you're feeling dark, please reach out
to somebody, anybody.
Speaker 5 (16:02):
Now.
Speaker 4 (16:02):
I was the type of person that was in theater,
was proud of my performance.
Speaker 5 (16:08):
I was very forward.
Speaker 4 (16:09):
You know.
Speaker 5 (16:10):
I just loved myself.
Speaker 4 (16:11):
I guess because I'd done it so long and I
did it so good, and all of a sudden, like Crystal,
there was a dark moment and I can't even remember
what it was about. All I did was I contacted
my doctor so fast. I said, you have got to
do something, please just help me, and they gave me
a very light drug that took the cloud off of me.
(16:33):
And the other thing for me was I started to pray.
That was a good thing for me. It just helps
me to meditate and to pull in center. But it's real.
There is no longer a normal. Every day is your
new normal. It's like a merry go round that's going
really really fast and you cannot get off. I feel
(16:54):
we've had to reinvent ourselves, right, Crystal. Oh, yes, Like
for me at the end of the day, choreographer, dancer,
all of that business. I'm a storyteller. That's what I do.
So what am I going to do now? I don't
know if it was God or the universe or something
bashed me on the head last July and said You're
going to be a writer. And that's what I've done.
(17:15):
I'm working on two novels. Three of my short stories
have been picked up for publishing. You find things to
change in your life, Scott.
Speaker 2 (17:24):
I can't believe you just said what you said, because
when I was in the hospital for six months, I had,
you know, physical therapists. I had an occupational therapist and
I had a recreational therapist, and the recreational therapist said,
do you want to paint? I said, I can't paint, right,
I've never painted in my life. Guess what I can paint?
I see me so the point where I'm pretty good,
(17:47):
if I have to say so myself.
Speaker 3 (17:49):
I've sold some paintings.
Speaker 2 (17:51):
I mean, you know, my hands are not great, but
I'm able to figure out a way to do it.
And when I do it, I don't feel the pain,
I don't feel the symptoms. I'm right in it exactly.
It's almost like meditating for me, Scott. There will be
something you don't know what it is. It could be
prayer for somebody, if people are not religious who were listening,
(18:12):
it could be meditation. But it could even be if
you can get outside and sit outside and look up
at the sky, that's meditation. Anything that takes you out
of the moment is very very helpful.
Speaker 4 (18:25):
I agree there's something about the mentality, because if you're
sitting around doing nothing but being in pain, you're going
to be in pain and your life is not going
to be very good.
Speaker 1 (18:34):
Right.
Speaker 4 (18:35):
The number one thing that happened to me was to
embrace this, not run. Embrace And I use this word
everywhere I go, even on myself.
Speaker 5 (18:46):
And it happened.
Speaker 4 (18:48):
I had a disabled parking tag to put on your
car for two years and I would.
Speaker 5 (18:53):
Not use it.
Speaker 4 (18:54):
And one day I couldn't do it anymore, and I
pulled up and I said, there's an empty spot, and
I put the tag on. I looked at myself and
I'm crying in the mirror, and all I said was embrace, Embrace, embrace,
get out of the car.
Speaker 5 (19:06):
And that's how it started.
Speaker 4 (19:08):
And so once you can do that and bring it
in and say this is part of me, this is
part of my life. Now I have to deal with it.
I have to grow with this thing, then you'll be okay.
Speaker 3 (19:20):
Right. I like to call it radical acceptance beautiful.
Speaker 1 (19:24):
How would you say that living with a rare disease
like CIDP change your outlook or approach on life. Have
there been moments of connection or strength that have come
through your journey?
Speaker 2 (19:35):
Yes, I think again it's the yin and yang of it.
I joke that every time I'm able to get to
the bathroom by myself, I have a thank you Jesus moment. Right,
It's like it sounds like a small deal, but it's not.
If you could take a shower by yourself, it's a
big deal. So I appreciate those things. I always was
very appreciative of life and a beautiful day in the
(19:59):
beach and that kind of thing. And I still am
that part of Crystal is still in there. I'm able
to find joy. I want to stress that, so I
believe that if you'll look for it. I think maybe
those of us with this have to kind of look
a little bit harder for those moments. But they are moments,
and you know what, that's all we have, right, We've
(20:20):
all just been through this terrible pandemic.
Speaker 3 (20:23):
I don't know about you, Scott leave the house for
eighteen months.
Speaker 5 (20:26):
Thank you?
Speaker 2 (20:27):
Right?
Speaker 5 (20:27):
Doctor said no, no.
Speaker 3 (20:29):
No, I was on immunosuppressence. I could not leave the.
Speaker 4 (20:31):
House exactly the same story, don't leave the house until
we say.
Speaker 3 (20:35):
So, right.
Speaker 2 (20:36):
But unfortunately, when you have a chronic illness, I called
myself a pandemic pro because there are a lot of
times when I'm in the house a lot, because sometimes
it's a little bit easier to isolate. I know that
may sound a little bit bizarre, because you crave human
contact and you crave going out or whatever, but sometimes
it could just be so difficult. It takes so much
(20:57):
out of you that it's almost easier to isolate.
Speaker 3 (21:01):
You know. I did want to.
Speaker 2 (21:02):
Make a point though, in terms of support, I've written
down a few places where I go to for support,
and I'm sure Scott maybe you have done them as well.
The GBSCIITB Foundation International. They have a great website. They
have a great organization that can guide you to Like Scott,
you found that Center of Excellence that's on their website
(21:23):
as well, and you can connect with other people who
also have the same disease that you have. I also
belong to the Rare Action Network, which is a great
online venue and sometimes they'll even have a study or
something that you might qualify for. I belong to NORD,
the National Organization of Rare Disorders. That's also another one.
(21:47):
I want to mention Clinicaltrials dot gov. And last, but
not least, I do want to mention ARDSINX, which I
know is sponsoring this podcast, but they have a website
called we Hear You CIDP dot com. I cannot believe
I have not known about this. It is patient stories
and all different points in their healing. But to be
(22:11):
able to get on that website and to be able
to read about other patient's story is phenomenal. So for
anybody who needs a little bit of extra. All these
websites that I've mentioned are.
Speaker 1 (22:21):
Wonderful, wonderful, and finally, Scott, any advice or message of
hope to give someone who's been newly diagnosed with this disorder.
Speaker 4 (22:28):
The big thing for me is been this embrace thing
is to really bring it in, to really get educated.
There's another big word we really should throw out there,
get educated. You know, when I've got a doctor telling
me to go home and google it, there is something wrong.
Speaker 5 (22:44):
He wasn't educated.
Speaker 4 (22:46):
But when I went to my Tampa team, I got
so much stuff in my hand and they told me
all those places that Crystal just mentioned to go. There
is another one called Rare Patient Voices. Is that the
same thing, Crystal?
Speaker 3 (22:57):
No, that's another one.
Speaker 4 (22:58):
Yeah, yeah, you can get involved with them under Rare
Patient Voices.
Speaker 5 (23:02):
Just look it up.
Speaker 4 (23:03):
That's about people needing to get it out there from
the people who have it. So those are the things
that I think are my big takeaway hopefully from this
podcast today is the embracing factor for yourself and for
anybody that's listening, not just the person who has the CIDP,
anybody that's listening. Remember, we're people and we want to
(23:25):
be treated like human beings. And we want you to
understand us because, like Crystal said, you see me hobbling
down the street, you'd barely know anything.
Speaker 5 (23:34):
Was wrong with me.
Speaker 1 (23:35):
Right, wonderful. So I think that's all I have for you.
And I think that this leaves us with such great
information and hope and insight, like you said, Scott, to
understand what it's like to be a human being with
this disease, not a disease that happened to a human being, right.
Speaker 5 (23:51):
I mean I hear this all the time. I'm not
defined by my disease, and I'm not.
Speaker 4 (23:55):
Nobody is. I can tell Crystal's not, you know. And
the more we do this spreads and spreads and spreads
and spreads. That's why it's important to get hooked up
with people come to the podcast, go online and become
part of the GBS at CIDP International Foundation, and it
just keeps rolling and all of a sudden, people go,
I know what that's about.
Speaker 1 (24:14):
I've heard about that, right.
Speaker 4 (24:17):
Part of that helps us with research, yes, so that
people get get excited about fronting research. The other thing
that's hard for research, there's very few of us out there.
Speaker 1 (24:28):
Of course, yeah.
Speaker 2 (24:29):
I do want to just leave people with this that
wherever you are right now in your CIDP journey, you
won't stay there. There's always a change, so don't get
so hung up. You know, I can't do this. I
did this yesterday. I can't do it today. You'll do
it again tomorrow. You won't stay there. I also want
to thank the caregivers who are our lifeline. I want
(24:50):
to thank all the pharmaceutical companies that are trying to
come up with new treatments and therapies for us. I
cannot thank everybody enough. And to the people who perhaps
are listening to this podcast who don't have CIDP all right,
maybe they're just tuning in. Be grateful. Be grateful for
a day where you're not in pain, or a day
(25:11):
where you could walk across the street you don't need help.
Be grateful for a boring day, oh I have to
get up and go to work today. Be grateful because
you never know.
Speaker 1 (25:21):
And I am grateful for both of you giving up
your time today and sharing your stories. Thank you so much,
Thank you, Martine, thank you, thank you so much to
Krystal and Scott, who are both so gracious and vulnerable,
while sharing their experiences. As with many rare diseases, CIDP
(25:43):
is not a very well known condition, so I'm grateful
to them for their willingness to share their stories and
beautiful outlook on life. Understanding more about autoimmune conditions has
really helped expand my understanding of these unique life experiences
through each powerful and unique personal journey. Tune in next
week to continue with another one of our regularly scheduled
(26:04):
episodes of Untold Stories. Life with my Asthenia Gravis. Untold
Stories was produced by iHeartRadio in partnership with ARGENICX and
Closer Look, and hosted by me Martine Hackett. Our executive
producer is Mali Sosha, our EP of Post Production is
Matt Stillo, and our producer is Sierra Kaiser. This episode
(26:26):
was edited by Sierra Spreen and written and produced by
Tyree Rush
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If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.