October 23, 2024 • 34 mins
For this special season three finale, Martine is joined by Kathy Perez, Head of Global Patient Advocacy at argenx. They reflect on some of the most impactful and moving moments from guests this season. Kathy asks Martine about her favorite learnings and takeaways as host of the show. While life with autoimmune conditions like MG or CIDP includes a wide range of emotions, Kathy and Martine dig into perhaps the strongest of them all: hope. Whether managing frustrations or juggling the physical changes and pain, hope is what continues to shine through as a beacon for perseverance. Together, Kathy and Martine underscore the transformative power of sharing each untold story, building a strong community, and demonstrating how fostering hope becomes armor for adversity.
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Episode Transcript
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Speaker 1 (00:03):
And so I started blogging, and you know, I slowly
found my community, people of other even if it wasn't MG,
just people with other autoimmune illnesses my age, who could
relate to some of the things, some of the worries,
some of the outlooks that we were all facing, and
just build this little, small, little community.
Speaker 2 (00:22):
It's been great.
Speaker 3 (00:25):
Hi everyone, and welcome to the season three finale of
Untold Stories Life with a Severe Autoimmune Condition. As always,
I'm your host, Martine Hackett. In this very special episode,
we dive into a theme that's been at the heart
of every story this season, hope. As we know for
those living with autoimmune conditions like MG and CIDP, hope
(00:48):
can present itself in a number of different ways and
come from surprising places. For this reflection, I have the
pleasure of being joined by Kathy Perez, head of Global
Patient Advocacy at OUR, where she spent the last five
years working closely with autoimmune communities to cultivate support and resources.
As we revisit special moments from our guests this season,
(01:11):
we will reflect on how each of them defines hope,
how it shapes their perspectives, and the impact that hope
has on their lives and those around them. Let's get
into it. Hi, Kathy, thanks so much for joining me today.
Speaker 2 (01:25):
Martin, it is great to see you again. Thank you
so much for your commitment to doing this.
Speaker 3 (01:32):
I've been really looking forward to having you here so
that we can reflect on this season together. As you know,
we've been focusing on the different emotions people living with
autoimmune conditions experience, and today we're going to focus on
the role of hope and how that has played out
in so many of our guests' experiences. As we listen
(01:53):
back to some of their stories, I want to kick
things off though, by asking about you and your background
as head of global patient Advocacy at our Genics. How
has that shaped the way that you've experienced the stories
our guests have shared this season.
Speaker 2 (02:10):
I would have to say we're very blessed to get
to know many people living with autoimmune conditions. But the
way they have shared their stories on this podcast, and
the thoughtfulness with which you have asked them questions and
really helped to elicit all of the different emotions that
their conditions and their diagnoses create for not only themselves,
(02:31):
but their families and their circle has really been meaningful.
It always gives you a new insight that you might
not have otherwise had.
Speaker 3 (02:40):
And how has it affected your definition of hope for
these individuals.
Speaker 2 (02:45):
My hope for them always is they have access to
good health care and good treatment, but also are surrounded
with a lot of love and a lot of support.
When you hear these stories that are likely and untold,
they haven't shared them. Quite often you find these tidbits
(03:06):
along the way, breadcrumbs if you will, throughout the podcast
and throughout their story where they have found hope in
others and in themselves and surprise themselves. And the very
exciting thing is that they want to pay it forward.
Speaker 3 (03:21):
And we'll hear more from the members of the community
who joined us this season in a little bit.
Speaker 2 (03:26):
Yes, I'm just thinking back about all of the people
living with autoimmune conditions that you've spoken to. This is
our third season of the podcast, and I'm especially curious
if there are a few that stand out to you
and how have they touched you.
Speaker 3 (03:43):
So I think that for me, as you mentioned, these
are stories that people really haven't necessarily shared or really
had the opportunity to reflect on. And so when I
think about some of the specific folks that I've met
and had a chance to talk to. I'm thinking about
some of the moms actually, I'm thinking about Tasha and
(04:03):
Morgan and Julie from this season who were able to
connect their stories of hope and caring for their children
and how they're able to do that and not let
those health conditions get in the way of sort of
a positive future for their children and themselves. So I
would say that that's one thing that really stood out
to me as a mom myself. You know, it really
(04:24):
forced me to really think about how do you manage that,
how do you manage a severe autoimmune condition and parenting?
Speaker 2 (04:32):
Absolutely, and it stood out to me as well being
a mother. But I also think about the preparation and
the time and the emotional investment that you make when
you're speaking to them, and has that been an impact
to you.
Speaker 3 (04:46):
Yeah, I've never done this before. I am a researcher.
I am a qualitative researcher, so I have had the
experience of talking to people and trying to get information
from them to address public health issues. But for me,
the preparation really is is in just being open, really listening,
and as much as possible through this technology to let
(05:07):
the people on the other side know that I care,
and I really want to be able to have them
feel safe that they can share their stories.
Speaker 2 (05:16):
Absolutely. You mentioned your background in public health and has
that shaped your definition of hope for individuals with autoimmune conditions.
Speaker 3 (05:25):
I mean, Kathy, I have to tell you, I can
honestly say I didn't think about autoimmune conditions in this
much depth before I started interviewing people who had them.
And I think part of it is because in public health,
we're focusing on populations. We're focusing on the big picture,
where you're thinking about things that affect millions of people,
and with this podcast, we're talking about relatively rare autoimmune conditions,
(05:48):
and even though autoimmune conditions altogether, in terms of how
many people it affects compared to other kinds of chronic diseases,
doesn't get the attention that it deserves. I've really learned
by hearing these individual stories that people are experiencing these
health journeys that need to be understood. It also makes
me think about folks who are experiencing ch health conditions
(06:10):
at large, and the idea that people who have these
severe autoimmune conditions are really at the forefront of understanding
the issues that they have with their health care providers,
issues that they have with their friends and family, in
terms of understanding what it is that they're going through
the issues that they have with insurance. Really they're at
(06:30):
the forefront of understanding what we know about dealing with
a chronic condition. And so to answer the question, I
do feel that it's listening to these stories that has
actually shaped my hope. These are people who have experienced
unbearable pain, fear, struggles, and uncertainty, and yet they have
been able to advocate support for others and manage their
(06:51):
conditions with such a powerful feeling of trust and belief
and positive expectations. And these are, as I said before,
not the common narratives that we hear in public health.
And yet these are exactly the kinds of stories that
we need to hear, stories that need to be included
as an important part of public health action. So for me,
(07:13):
this has really been an education and awakening and it
makes me fully recognize how important sharing our stories is.
Speaker 2 (07:21):
That's wonderful. And on the flip side of that, there's
the audience that is listening to the stories and continuing
to come back every season, which is wonderful. What would
you want them to take away from season three?
Speaker 3 (07:33):
Yeah, I can tell you, Kathy that I've already gotten
some amazing feedback from listeners, and people really are just
able to hear these stories, especially the season of these
stories about the emotions that people have shared, and they're
able to connect them to their own experiences. I've heard
from caregivers who have gained insight into what their loved
(07:54):
ones are going through. People with other autoimmune conditions that
are not being covered in this podcast are recognizing that
they need a supportive community and also recognizing what is
it that we need as a society to provide for
people who are going through something that might seem invisible. Right,
many of these are folks who have sort of invisible disabilities,
(08:15):
and so how can we be aware of what those
things are? So I think that for me, what I
have already heard listeners getting from this is a sense
of how we're all connected.
Speaker 2 (08:26):
That's amazing. I didn't know that they reached out to you,
So that's really exciting, very meaningful.
Speaker 3 (08:32):
Yeah, I now want to take a moment to reflect
back on the stories that we've heard in the podcast
and highlight how some of our guests this season have
really learned to redefine hope as they rise to meet
one of the most challenging moments of their lives, being
(08:53):
diagnosed with an autoimmune condition. So, as Kathy and I
reflect on some moments from this season on an underscore
how each guest has redefined hope for themselves, showing us
that it can be reshaped and strengthened in the most
challenging times. It reminds us that hope is constantly evolving
and can bend with each chapter in life. Let's start
(09:18):
off by remembering Craig, who we met in episode five
this season. Unsure about what his CIDP diagnosis meant for
his career as a track and field coach, he looked
at this as an opportunity to chart a new path
and keep hope alive with new interests. Let's take a listen.
Speaker 4 (09:41):
It was actually the hardest in the beginning because I
just didn't know what was going on for me. Once
I know what's going on, it's a lot easier. So
it definitely threw like a wrench in the works. And
as I just kept getting worse, I was kind of
always just subconsciously taught. Like my parents never told me this,
but my mom, I noticed, would always kind of hope
for the best and plan for the worst. So I
started kind of preemptively learning more like computer based things.
(10:04):
I was like, look, maybe I can get into graphic design,
because like, no one's gonna want to hire like a
paralyzed track or cross country coach, you know, so the
one I heire someone who can like show them how
to do the drills and stuff. So I was kind
of like hedging my bets because I had no idea
what my future held. I was just like, you know what,
this is my life. There's nothing that I can do
right now. If I can change something, then I will.
(10:25):
If I can't change it, then I'm going to make
the best of it. This is what I'm dealing with.
Like I could tell the story about how I got
depressed and I like didn't do anything, or I could
have a much better story of like how I was
like really happy and positive the whole time, even when
I was going through like the hardest period of my life.
Speaker 2 (10:44):
I really like Craig's mom, that's kind of my motto
as well. But I love that we were able to
pull this out of his story because so many people
living with severe autoimmune conditions go through this, it sounds
to me like he really was able to change his
perspective and find hope through some gratitude and really working
(11:05):
through that. And that does take emotional strength and health sometimes,
and it takes hope.
Speaker 3 (11:12):
Yeah, And he was very clear there are things I
can control, and there are things I can control, and
what I can't control, I have to let go. And
that's kind of a big piece of trust, right when
it comes to recognizing this is my life now. Yes
it's not what I maybe had planned, but this is
where I am now, and to me, that's kind of
fundamental to hope. Right, is this idea of just this
(11:35):
trust that things will work out. I might not know how,
but they will. You're so right, So let's think about
this idea of looking back on your story and how
you're sort of making sense of it, and also about
the connections that you make and how that can help
be the strength that you need to get you through.
I think a great example of this was Morgan, who
(11:57):
found strength and the ability to say, you know what,
I'm going to use what I have and what I
know to help others. Let's take a listen.
Speaker 1 (12:06):
It really is amazing how being able to use my
pain and help other people has helped me heal in
other ways. Even though I would not wish autoimmune illness
on anybody, but it gives me purpose, you know, and like, okay, well, Lisa,
this was for a reason at least I'm able to
give back or help someone not get to that super
(12:27):
low point that I've been in my journey to permit that, like,
let's catch you before you hit rock bottom. Maybe you
dropped a little bit, but let's get you before you
get all the way down there.
Speaker 3 (12:38):
Okay. So that was Morgan who had the best attitude.
Speaker 2 (12:42):
Just the best and she really found ways to pay
it forward and to continue to share, which is so important.
Speaker 3 (12:51):
Yeah, the idea of looking outside yourself, right, and how
challenging that is because what you're going through with a
severe autoimmune condition is so unknown to you, it changes
all the time, it can vary day to day. And
then to also find that strength and that ability to say, like,
you know what, I'm going to use what I have
and what I know to help others. And I think
(13:14):
Morgan really exemplify that.
Speaker 2 (13:16):
Yes, and she is one that mentioned pain and sometimes
that's emotional pain and sometimes it's physical pain.
Speaker 3 (13:23):
Yeah, And the truth is that level of support that
you're providing, you also have to recognize that you need
support too, and that can come from anywhere exactly.
Speaker 2 (13:34):
We're going to hear next from Tony and he talks
about his wife, who played a very important role as
his caregiver and partner through his journey.
Speaker 5 (13:45):
I was in hospital most of the time, So the
best thing that ever happened to me was having a
good advocate in the name of Katherine Claire. I spent
nine months in various rehabs, three months at a time
when I was in hospital, I couldn't walk, I couldn't
talk for a while, and God blessed Catherine. If it
(14:06):
hadn't been for her, as I say, I wouldn't be
alive today.
Speaker 2 (14:11):
Wow, it's so powerful. Yeah, Tony experienced the very worst
of what that condition can bring to a family, and
having Catherine there by his side, I know, was so
meaningful and important to him and to his care team.
Knowing that he had that additional support. Catherine really saved him.
Speaker 3 (14:33):
I mean getting into those details and recognizing the kind
of person that she is he had like a secret
weapon in her.
Speaker 2 (14:40):
Yes, everybody deserves one of those.
Speaker 3 (14:42):
That's amazing. Yeah, And I think that the other thing
is not only do we lean on each other, but
we can also learn from each other. We are going
to hear next from Tasha, and Tasha is going to
explain a little bit more about how she learned how
to deal with her and I.
Speaker 1 (15:02):
Had an inside man and it was one of my aunts.
Speaker 2 (15:07):
She had MG as.
Speaker 1 (15:08):
Well, so I actually got to see what MG could do.
I got a chance to see how low it could
get for someone with it. I never saw anyone or
anything or read anything that would break up person down
(15:28):
like that. So when I got that frontline view, it
literally scared the daylights out of me. But it also
helped me to get myself to a point where I
spoke to myself and says, you know, Atasha, what can
you do to minimize aggravating yourself, aggravating symptoms and things
(15:50):
like that. But again, at this time, I was still
symptom free, still mad free. But watching her navigate and
everything from then up until the time she passed really
got me to a space where I live as best
as I possibly can. I do everything that I want
(16:10):
to do. I take numerous amounts of naps, which I
think it should just be a daily thing for everybody.
Speaker 2 (16:20):
I like that we should all take more naps.
Speaker 3 (16:22):
She grew it, Yeah, and I think still for Tasha,
this idea of having that sort of, like she said,
an inside man with her aunt really helped her.
Speaker 2 (16:31):
So unique to have an aunt that had the condition
and get to learn from them. I'm sure it was
scary at times, yeah, but she had a view forward.
Speaker 3 (16:41):
Yeah, and it really kind of I think emphasizes this
idea of having somebody else who knows what you're going
through exactly.
Speaker 2 (16:48):
We meet a lot of individuals living with severe autoimmune
conditions that have never met another person with the same
diagnosis that they have, and that can be very scary.
Am I the only one in who's going to believe me?
And who's going to understand? And so the compassion and
empathy that her aunt provided to her and she probably
(17:10):
provided back to her aunt. And there's that thought of
redefining your perspective so that you can adjust amidst the
diagnosis and the evolution of your condition, your body, your lifestyle,
the activities that you are able to do and that
you like to do. It's very much a redefining and
(17:30):
has to happen in a lot of ways.
Speaker 3 (17:32):
And look, it's not going to happen overnight, right, I mean,
I think that's another thing that we recognize is that
time is the element here too that's sort of invisible,
and that's different for every person. You know, there's some
people who are like, oh, Okay, this is what I
got to do, but there are other people who it
really takes time to just sort of recognize that my
identity might be different very much. We'll be back with
(17:57):
more untold stories after a quick break. As a global
immunology company committed to improving the lives of people suffering
from severe autoimmune conditions, Argenics is dedicated to shining a
light on resources that support the CIDP, or chronic inflammatory
(18:18):
demilinating polyneuropathy community. Shining through CIDP is a new website
that aims to empower those living with this rare condition
in their families to create the space needed for a
more joyful life. Shining through CIDP features real stories, tips
on emotional self care, and new ideas to help navigate
the CIDP journey. For more information, visit Shining THROUGHCIDP dot Com,
(18:47):
and now back to untold stories. The importance of having
support as you navigate life within autoimmune condition cannot be overstated,
but sharing your experiences and giving back to the community
whenever possible can be equally as vital. As Kathy and
(19:10):
I revisit our guest's most impactful moments of connection, we'll
hear how inviting others on your journey can really ignite
a new sense of meaning for hope and empowerment. I
think we would be great to start with talking about
Julie and what she did and is doing when it
(19:30):
comes to how she's using her CIDP diagnosis to really
advocate for others.
Speaker 6 (19:38):
I didn't write it because I wanted to become rich
and famous. I wrote it because I knew there was
a need, and we donated the book to the GBS
and CIDP Foundation, and we wanted it to be available
for parents or children or families of individuals that have CIDP.
Speaker 3 (19:56):
I think that it has.
Speaker 6 (19:57):
Basically empowered my resilience by allowing me to know that
I am a productive member of society, that just because
I have this disease, I still am able to teach others.
I'm able to help others with the disease get through
those rough days and to help them navigate through the
(20:18):
system of insurance and whatnot that I've had to navigate through,
or to help individuals who might be having difficulties zipping
their pants and saying, hey, have you tried this? You
know so, I think it's just helped me all the
way around to help others, And that's kind of been
my main thing, is to know that I can still
(20:40):
do things and feel like I've accomplished something. I felt
that when I was teaching full time, but now I'm
able to still feel that accomplishment when I'm helping others
make their lives easier.
Speaker 2 (20:56):
Julie's a very special lady, and she just has continually
been helping the community and really support others in multiple ways.
Speaker 3 (21:06):
Julie is awesome. She was talking about the children's book
that she wrote called Breeze Just Like Me, which was
about life with CIDP and helping to explain that condition
to others, and just in that service of writing this
children's book and distributing it to everybody who needs it
is really, I mean, such a selfless act. And something
(21:27):
that I can imagine just has helped a lot of people.
Speaker 2 (21:30):
Absolutely. Next, we're going to hear from Morgan, who is
another one of our guests who found hope through advocacy
and her community.
Speaker 1 (21:41):
I just remember after one hospital, say, just feeling so
hopeless and breaking down and just being such despair, Like fine,
when I give up. And at that point, I decided
to be a recluse, and I completely shut myself out
from the world. So all I did every day I
woke up, I went to work, I came home, and
(22:03):
I'm like I said, I bought a three level town
home and my bedroom was on the third level. I
couldn't even make it up my stairs to go to
my room. So every day when I came in, I
just had to lay in like my sitting area for hours,
take a nap, and I would just sometimes stay there
till nine o'clock at night and then finally make my
way up the stairs. But like, I just reclused because
I had given up, because I just felt like, what's
(22:25):
the point if I try to do anything. My body's
fighting against me. This is my new reality. Mynew reality
is nothingness, and all I have is work.
Speaker 2 (22:34):
Right now, I was like.
Speaker 1 (22:36):
What if I can use this my pain because I
was in a lot of pain and help other people.
And so I started blogging, and you know, I slowly
found my community, people of other even if it wasn't mGy,
just people with other autoimmune illnesses, my age, who could
relate to some of the things, some of the worries,
(22:58):
some of the outlooks that we were all facing, and
just build this little, small, little community. It's been great.
Speaker 2 (23:06):
It's amazing the technology of blogging and having it available
so other people can engage with you and create that
community that she's talking about, because you know that through
that she's helped many, many.
Speaker 3 (23:18):
People absolutely, and think about how she very vividly describes
how dark those moments were for her. Plus remember Morgan
was only twenty five when she was diagnosed, which, if
you think about it, only adds to the stress and
confusion of her situation. And even to take that, like
I said, the ability, the time right to be able
(23:40):
to just process that, to go through that. But then
somewhere somewhere in you is so I was saying, like,
you know what, no, this is not the end for me.
I'm going to use this to be able to help others.
And I'm going to create something and put that out
in the world and connect to others. If that is
not the definition of hope, I don't know what is.
And so let's go back to Craig, and I think
(24:00):
Craig also has a really great way. You know, as
we were just talking about using technology, using the storytelling
to be able to communicate and to advocate for others,
and so, as you may or remember, he learned about
CIDV on YouTube and so this then inspired his own channel,
No Egg Craig.
Speaker 4 (24:23):
I started because when I first got diagnosed, I went home,
I went on YouTube. That was like the first thing
I did, and there was almost no videos about it.
And I was like, Okay, when I get better, I'm
going to make an entire channel dedicated this so that
then when somebody else gets diagnosed they don't feel so alone.
Speaker 3 (24:38):
And he did.
Speaker 2 (24:40):
He did. Yes, that takes a lot of inspiration. What's
interesting to me is how much information is out there
and it's still difficult to find for individuals. So him
just creating this, I'm sure it's helpful. And the more
ways that people can find information and meet others that
may have the same diagnosis.
Speaker 3 (25:01):
To me, Kathy, this really highlights the idea of storytelling
like we were talking about earlier, Right, Yes, for Craig
to be able to not only share his story in
written form, but you know, to have it be like
you're seeing his face, you're seeing what he's going through,
You're connecting to him as a person with CIDP like
that also is very powerful because, like you said, you
(25:22):
might go through your life and never meet a physical
person who has your same condition. But to be able
to see them and to kind of get into a
relationship right with these people is very meaningful. It is
we also know that there are many different ways to
be able to connect people and their stories, whether that's interpersonally,
(25:43):
through YouTube or through larger organizations. So next we're going
to hear from Dana and she had some frustrations for
sure with her CIDP diagnosis and experiences, but she definitely
discovered to be able to help others to avoid the
same struggles she experienced. Let's Helliston.
Speaker 7 (26:08):
Working with the GBSCIDP Foundation. I have had the good
fortune to be the liaison that can go to a
hospital when someone has just been diagnosed with either GBS
or CIDP and meet with the patient or meet with
their families to show them that this is not a
life ending disease. This is the beginning of the next chapter.
(26:32):
So what we do after diagnosis is not only medically
but personally. You know, psychologically, whether or not it means
getting into therapy, whether or not it means, you know,
joining support groups, whether or not it means becoming a liaison.
I will always continue to work in this facet because
(26:54):
the foundation really saved my life because it got me
talking to other people. I mean when I get together
with my friends and I don't have to even like
sometimes you don't even have to say a word. They
know you're not having a good day. And by the way,
part of the thing I do is I'm also part
of Bridge the Gap, which is helping to educate doctors
(27:15):
on this disease, regular GPS, grumatologists, people that don't specialize
in neurological or autoimmune diseases.
Speaker 3 (27:26):
And that's huge to be able to again take your
experience and not just talk to other people, but to
really level that up and to say I'm going to
educate physicians.
Speaker 2 (27:36):
I'm so impressed that she has been able to do
that and also that the foundation started that program. It's
so important that other healthcare professionals can hear, maybe not
from the patient that they're currently treating, but a different
patient who can share with them in a different way
their experience, because the relationship between a patient and physician
(27:58):
quite often is focused on certain things and it sometimes
takes that third voice to help inform.
Speaker 3 (28:06):
And that's exactly what Dana's doing with the gbs CIDP
Foundation to be able to take her experiences and bring
that to an audience of people who are really just
hungry for that kind of understanding, experience and really advocacy.
Speaker 2 (28:26):
Right right next, we're going to hear from Tony, who
was thinking very very practically, and I was so interested
in the way that he really is advocating and helping
others to advocate for themselves.
Speaker 3 (28:38):
Yeah, and something I found really cool was his excitement
for sharing what he calls a blue card, which displays
a list of medications that folks with MG should not
take so you can bring it to places like the pharmacy.
As you'll hear, he shares copies of the card as
a simple resource that people can carry around.
Speaker 5 (28:57):
If I come across somebody on the Facebook, I'll respond,
you know, you have to one always be positive because
somebody is always worse off than you are. That's been
my whole attitude ever since I had this disease. There's
somebody worse off than I am. I speak to them
and I'll send them the blue card. This is a
list of medications that can take and you know very often,
(29:20):
you know, thank you very much because their doctors don't know.
Speaker 2 (29:26):
It was very special to have Tony and Catherine from
Canada participate in this season. But he was thinking very
practically because he knew that he had a situation in
a pharmacy where he had an understanding of something he
probably should not be taking and needed to inform the
pharmacist and other individuals. I think such a practical thing,
(29:46):
but so very helpful to the community for him to
be handing out the blue cards.
Speaker 3 (29:52):
Yeah, literally, like here is my blue card, you know,
and like you said, super practical but so helpful. As
our conversation came to a close, Kathy and I really
solidify hope as just a starting point, recognizing that what
brings one person hope maybe the spark that ignites it
for someone else. Let's listen to Tasha Craig, Julie Morgan, Tony,
(30:16):
and Dana share the sources of hope that motivate them
to keep going.
Speaker 1 (30:23):
My life gives me hope, my family.
Speaker 2 (30:26):
My son.
Speaker 4 (30:28):
I definitely have hope for me and then also for
like a lot of like medical interventions.
Speaker 6 (30:33):
I'm taking my disability and using it to help others.
Speaker 1 (30:39):
I would love to do more work with Spoonies and
in the community and just continue to you know, spread
light and uplift others.
Speaker 5 (30:50):
I am still up and standing. No cain, no walker,
no wheelchair.
Speaker 7 (30:56):
I'm hope. I had an infusion in six months.
Speaker 3 (31:00):
What is your hope? I think one of the things
that I've certainly gotten out of listening to our guests
this season is that you might be giving some things up,
but you have a very strong possibility of gaining hope
for your new life and the new circumstances and people
(31:22):
that you're going to experience.
Speaker 2 (31:24):
Yes, and just for.
Speaker 3 (31:26):
Me personally, it makes me extremely grateful to be able
to hear their stories and the power behind those stories,
and to remind everyone to really hold on to hope
and to look forward.
Speaker 2 (31:38):
I join you in being extremely grateful to hear them
and to be able to share the stories as widely
and broadly as we possibly can, and to include more
guests and help all of them learn how to tell
their story and whatever that way is.
Speaker 3 (31:55):
I want to ask you before we go, what hope
do you have for the future of MG and CIDP
and those living with these conditions.
Speaker 2 (32:05):
What I think about the most for these two communities
is that individuals that are living with an MG or
a CIDP diagnosis will find the community whatever that is
for them. And I'm so hopeful. We live in a
very wonderful time where there's a lot of innovation happening,
and whether it's innovation around just medical technology, it's the
(32:29):
ability to have virtual health visits. There's some very simple
things that we didn't have several years ago, and we're
watching it all happen right before our eyes.
Speaker 3 (32:40):
What a beautiful note. Tet and Kathy, thank you so
much again for being here.
Speaker 2 (32:45):
Well, thank you so much for your dedication and for
season three.
Speaker 3 (32:53):
As we wrap up this season, I want to take
a moment to thank each of our guests for sharing
their stories. I hope that these conversations have reminded you
as they continue to remind me that in challenging times,
finding hope and holding on to it is essential. I'm
already looking forward to exploring more untold stories and the
(33:13):
incredible discussions ahead. In the meantime, I'd love to hear
about your experiences share them with me on social media.
For more support and inspiration, check out Shining through CIDP
at SHININGTHROUGHCIDP dot com and MG United at Mgdashunited dot com.
Thank you for being part of this journey. Let's keep
(33:34):
hope alive together. Untold Stories Life with a Severe Autoimmune
Condition is produced by Ruby Studio from iHeartMedia in partnership
with Argenis and hosted by me Martin Hackett. Our executive
producer is Malisosha. Our EP of Post production is Matt Stillo,
along with supervising producer Sierra Kaiser and post producer Sierra Spreen.
(33:57):
This episode was written by Diana Davis.
And so I started blogging, and you know, I slowly
found my community, people of other even if it wasn't MG,
just people with other autoimmune illnesses my age, who could
relate to some of the things, some of the worries,
some of the outlooks that we were all facing, and
just build this little, small, little community.
Speaker 2 (00:22):
It's been great.
Speaker 3 (00:25):
Hi everyone, and welcome to the season three finale of
Untold Stories Life with a Severe Autoimmune Condition. As always,
I'm your host, Martine Hackett. In this very special episode,
we dive into a theme that's been at the heart
of every story this season, hope. As we know for
those living with autoimmune conditions like MG and CIDP, hope
(00:48):
can present itself in a number of different ways and
come from surprising places. For this reflection, I have the
pleasure of being joined by Kathy Perez, head of Global
Patient Advocacy at OUR, where she spent the last five
years working closely with autoimmune communities to cultivate support and resources.
As we revisit special moments from our guests this season,
(01:11):
we will reflect on how each of them defines hope,
how it shapes their perspectives, and the impact that hope
has on their lives and those around them. Let's get
into it. Hi, Kathy, thanks so much for joining me today.
Speaker 2 (01:25):
Martin, it is great to see you again. Thank you
so much for your commitment to doing this.
Speaker 3 (01:32):
I've been really looking forward to having you here so
that we can reflect on this season together. As you know,
we've been focusing on the different emotions people living with
autoimmune conditions experience, and today we're going to focus on
the role of hope and how that has played out
in so many of our guests' experiences. As we listen
(01:53):
back to some of their stories, I want to kick
things off though, by asking about you and your background
as head of global patient Advocacy at our Genics. How
has that shaped the way that you've experienced the stories
our guests have shared this season.
Speaker 2 (02:10):
I would have to say we're very blessed to get
to know many people living with autoimmune conditions. But the
way they have shared their stories on this podcast, and
the thoughtfulness with which you have asked them questions and
really helped to elicit all of the different emotions that
their conditions and their diagnoses create for not only themselves,
(02:31):
but their families and their circle has really been meaningful.
It always gives you a new insight that you might
not have otherwise had.
Speaker 3 (02:40):
And how has it affected your definition of hope for
these individuals.
Speaker 2 (02:45):
My hope for them always is they have access to
good health care and good treatment, but also are surrounded
with a lot of love and a lot of support.
When you hear these stories that are likely and untold,
they haven't shared them. Quite often you find these tidbits
(03:06):
along the way, breadcrumbs if you will, throughout the podcast
and throughout their story where they have found hope in
others and in themselves and surprise themselves. And the very
exciting thing is that they want to pay it forward.
Speaker 3 (03:21):
And we'll hear more from the members of the community
who joined us this season in a little bit.
Speaker 2 (03:26):
Yes, I'm just thinking back about all of the people
living with autoimmune conditions that you've spoken to. This is
our third season of the podcast, and I'm especially curious
if there are a few that stand out to you
and how have they touched you.
Speaker 3 (03:43):
So I think that for me, as you mentioned, these
are stories that people really haven't necessarily shared or really
had the opportunity to reflect on. And so when I
think about some of the specific folks that I've met
and had a chance to talk to. I'm thinking about
some of the moms actually, I'm thinking about Tasha and
(04:03):
Morgan and Julie from this season who were able to
connect their stories of hope and caring for their children
and how they're able to do that and not let
those health conditions get in the way of sort of
a positive future for their children and themselves. So I
would say that that's one thing that really stood out
to me as a mom myself. You know, it really
(04:24):
forced me to really think about how do you manage that,
how do you manage a severe autoimmune condition and parenting?
Speaker 2 (04:32):
Absolutely, and it stood out to me as well being
a mother. But I also think about the preparation and
the time and the emotional investment that you make when
you're speaking to them, and has that been an impact
to you.
Speaker 3 (04:46):
Yeah, I've never done this before. I am a researcher.
I am a qualitative researcher, so I have had the
experience of talking to people and trying to get information
from them to address public health issues. But for me,
the preparation really is is in just being open, really listening,
and as much as possible through this technology to let
(05:07):
the people on the other side know that I care,
and I really want to be able to have them
feel safe that they can share their stories.
Speaker 2 (05:16):
Absolutely. You mentioned your background in public health and has
that shaped your definition of hope for individuals with autoimmune conditions.
Speaker 3 (05:25):
I mean, Kathy, I have to tell you, I can
honestly say I didn't think about autoimmune conditions in this
much depth before I started interviewing people who had them.
And I think part of it is because in public health,
we're focusing on populations. We're focusing on the big picture,
where you're thinking about things that affect millions of people,
and with this podcast, we're talking about relatively rare autoimmune conditions,
(05:48):
and even though autoimmune conditions altogether, in terms of how
many people it affects compared to other kinds of chronic diseases,
doesn't get the attention that it deserves. I've really learned
by hearing these individual stories that people are experiencing these
health journeys that need to be understood. It also makes
me think about folks who are experiencing ch health conditions
(06:10):
at large, and the idea that people who have these
severe autoimmune conditions are really at the forefront of understanding
the issues that they have with their health care providers,
issues that they have with their friends and family, in
terms of understanding what it is that they're going through
the issues that they have with insurance. Really they're at
(06:30):
the forefront of understanding what we know about dealing with
a chronic condition. And so to answer the question, I
do feel that it's listening to these stories that has
actually shaped my hope. These are people who have experienced
unbearable pain, fear, struggles, and uncertainty, and yet they have
been able to advocate support for others and manage their
(06:51):
conditions with such a powerful feeling of trust and belief
and positive expectations. And these are, as I said before,
not the common narratives that we hear in public health.
And yet these are exactly the kinds of stories that
we need to hear, stories that need to be included
as an important part of public health action. So for me,
(07:13):
this has really been an education and awakening and it
makes me fully recognize how important sharing our stories is.
Speaker 2 (07:21):
That's wonderful. And on the flip side of that, there's
the audience that is listening to the stories and continuing
to come back every season, which is wonderful. What would
you want them to take away from season three?
Speaker 3 (07:33):
Yeah, I can tell you, Kathy that I've already gotten
some amazing feedback from listeners, and people really are just
able to hear these stories, especially the season of these
stories about the emotions that people have shared, and they're
able to connect them to their own experiences. I've heard
from caregivers who have gained insight into what their loved
(07:54):
ones are going through. People with other autoimmune conditions that
are not being covered in this podcast are recognizing that
they need a supportive community and also recognizing what is
it that we need as a society to provide for
people who are going through something that might seem invisible. Right,
many of these are folks who have sort of invisible disabilities,
(08:15):
and so how can we be aware of what those
things are? So I think that for me, what I
have already heard listeners getting from this is a sense
of how we're all connected.
Speaker 2 (08:26):
That's amazing. I didn't know that they reached out to you,
So that's really exciting, very meaningful.
Speaker 3 (08:32):
Yeah, I now want to take a moment to reflect
back on the stories that we've heard in the podcast
and highlight how some of our guests this season have
really learned to redefine hope as they rise to meet
one of the most challenging moments of their lives, being
(08:53):
diagnosed with an autoimmune condition. So, as Kathy and I
reflect on some moments from this season on an underscore
how each guest has redefined hope for themselves, showing us
that it can be reshaped and strengthened in the most
challenging times. It reminds us that hope is constantly evolving
and can bend with each chapter in life. Let's start
(09:18):
off by remembering Craig, who we met in episode five
this season. Unsure about what his CIDP diagnosis meant for
his career as a track and field coach, he looked
at this as an opportunity to chart a new path
and keep hope alive with new interests. Let's take a listen.
Speaker 4 (09:41):
It was actually the hardest in the beginning because I
just didn't know what was going on for me. Once
I know what's going on, it's a lot easier. So
it definitely threw like a wrench in the works. And
as I just kept getting worse, I was kind of
always just subconsciously taught. Like my parents never told me this,
but my mom, I noticed, would always kind of hope
for the best and plan for the worst. So I
started kind of preemptively learning more like computer based things.
(10:04):
I was like, look, maybe I can get into graphic design,
because like, no one's gonna want to hire like a
paralyzed track or cross country coach, you know, so the
one I heire someone who can like show them how
to do the drills and stuff. So I was kind
of like hedging my bets because I had no idea
what my future held. I was just like, you know what,
this is my life. There's nothing that I can do
right now. If I can change something, then I will.
(10:25):
If I can't change it, then I'm going to make
the best of it. This is what I'm dealing with.
Like I could tell the story about how I got
depressed and I like didn't do anything, or I could
have a much better story of like how I was
like really happy and positive the whole time, even when
I was going through like the hardest period of my life.
Speaker 2 (10:44):
I really like Craig's mom, that's kind of my motto
as well. But I love that we were able to
pull this out of his story because so many people
living with severe autoimmune conditions go through this, it sounds
to me like he really was able to change his
perspective and find hope through some gratitude and really working
(11:05):
through that. And that does take emotional strength and health sometimes,
and it takes hope.
Speaker 3 (11:12):
Yeah, And he was very clear there are things I
can control, and there are things I can control, and
what I can't control, I have to let go. And
that's kind of a big piece of trust, right when
it comes to recognizing this is my life now. Yes
it's not what I maybe had planned, but this is
where I am now, and to me, that's kind of
fundamental to hope. Right, is this idea of just this
(11:35):
trust that things will work out. I might not know how,
but they will. You're so right, So let's think about
this idea of looking back on your story and how
you're sort of making sense of it, and also about
the connections that you make and how that can help
be the strength that you need to get you through.
I think a great example of this was Morgan, who
(11:57):
found strength and the ability to say, you know what,
I'm going to use what I have and what I
know to help others. Let's take a listen.
Speaker 1 (12:06):
It really is amazing how being able to use my
pain and help other people has helped me heal in
other ways. Even though I would not wish autoimmune illness
on anybody, but it gives me purpose, you know, and like, okay, well, Lisa,
this was for a reason at least I'm able to
give back or help someone not get to that super
(12:27):
low point that I've been in my journey to permit that, like,
let's catch you before you hit rock bottom. Maybe you
dropped a little bit, but let's get you before you
get all the way down there.
Speaker 3 (12:38):
Okay. So that was Morgan who had the best attitude.
Speaker 2 (12:42):
Just the best and she really found ways to pay
it forward and to continue to share, which is so important.
Speaker 3 (12:51):
Yeah, the idea of looking outside yourself, right, and how
challenging that is because what you're going through with a
severe autoimmune condition is so unknown to you, it changes
all the time, it can vary day to day. And
then to also find that strength and that ability to say, like,
you know what, I'm going to use what I have
and what I know to help others. And I think
(13:14):
Morgan really exemplify that.
Speaker 2 (13:16):
Yes, and she is one that mentioned pain and sometimes
that's emotional pain and sometimes it's physical pain.
Speaker 3 (13:23):
Yeah, And the truth is that level of support that
you're providing, you also have to recognize that you need
support too, and that can come from anywhere exactly.
Speaker 2 (13:34):
We're going to hear next from Tony and he talks
about his wife, who played a very important role as
his caregiver and partner through his journey.
Speaker 5 (13:45):
I was in hospital most of the time, So the
best thing that ever happened to me was having a
good advocate in the name of Katherine Claire. I spent
nine months in various rehabs, three months at a time
when I was in hospital, I couldn't walk, I couldn't
talk for a while, and God blessed Catherine. If it
(14:06):
hadn't been for her, as I say, I wouldn't be
alive today.
Speaker 2 (14:11):
Wow, it's so powerful. Yeah, Tony experienced the very worst
of what that condition can bring to a family, and
having Catherine there by his side, I know, was so
meaningful and important to him and to his care team.
Knowing that he had that additional support. Catherine really saved him.
Speaker 3 (14:33):
I mean getting into those details and recognizing the kind
of person that she is he had like a secret
weapon in her.
Speaker 2 (14:40):
Yes, everybody deserves one of those.
Speaker 3 (14:42):
That's amazing. Yeah, And I think that the other thing
is not only do we lean on each other, but
we can also learn from each other. We are going
to hear next from Tasha, and Tasha is going to
explain a little bit more about how she learned how
to deal with her and I.
Speaker 1 (15:02):
Had an inside man and it was one of my aunts.
Speaker 2 (15:07):
She had MG as.
Speaker 1 (15:08):
Well, so I actually got to see what MG could do.
I got a chance to see how low it could
get for someone with it. I never saw anyone or
anything or read anything that would break up person down
(15:28):
like that. So when I got that frontline view, it
literally scared the daylights out of me. But it also
helped me to get myself to a point where I
spoke to myself and says, you know, Atasha, what can
you do to minimize aggravating yourself, aggravating symptoms and things
(15:50):
like that. But again, at this time, I was still
symptom free, still mad free. But watching her navigate and
everything from then up until the time she passed really
got me to a space where I live as best
as I possibly can. I do everything that I want
(16:10):
to do. I take numerous amounts of naps, which I
think it should just be a daily thing for everybody.
Speaker 2 (16:20):
I like that we should all take more naps.
Speaker 3 (16:22):
She grew it, Yeah, and I think still for Tasha,
this idea of having that sort of, like she said,
an inside man with her aunt really helped her.
Speaker 2 (16:31):
So unique to have an aunt that had the condition
and get to learn from them. I'm sure it was
scary at times, yeah, but she had a view forward.
Speaker 3 (16:41):
Yeah, and it really kind of I think emphasizes this
idea of having somebody else who knows what you're going
through exactly.
Speaker 2 (16:48):
We meet a lot of individuals living with severe autoimmune
conditions that have never met another person with the same
diagnosis that they have, and that can be very scary.
Am I the only one in who's going to believe me?
And who's going to understand? And so the compassion and
empathy that her aunt provided to her and she probably
(17:10):
provided back to her aunt. And there's that thought of
redefining your perspective so that you can adjust amidst the
diagnosis and the evolution of your condition, your body, your lifestyle,
the activities that you are able to do and that
you like to do. It's very much a redefining and
(17:30):
has to happen in a lot of ways.
Speaker 3 (17:32):
And look, it's not going to happen overnight, right, I mean,
I think that's another thing that we recognize is that
time is the element here too that's sort of invisible,
and that's different for every person. You know, there's some
people who are like, oh, Okay, this is what I
got to do, but there are other people who it
really takes time to just sort of recognize that my
identity might be different very much. We'll be back with
(17:57):
more untold stories after a quick break. As a global
immunology company committed to improving the lives of people suffering
from severe autoimmune conditions, Argenics is dedicated to shining a
light on resources that support the CIDP, or chronic inflammatory
(18:18):
demilinating polyneuropathy community. Shining through CIDP is a new website
that aims to empower those living with this rare condition
in their families to create the space needed for a
more joyful life. Shining through CIDP features real stories, tips
on emotional self care, and new ideas to help navigate
the CIDP journey. For more information, visit Shining THROUGHCIDP dot Com,
(18:47):
and now back to untold stories. The importance of having
support as you navigate life within autoimmune condition cannot be overstated,
but sharing your experiences and giving back to the community
whenever possible can be equally as vital. As Kathy and
(19:10):
I revisit our guest's most impactful moments of connection, we'll
hear how inviting others on your journey can really ignite
a new sense of meaning for hope and empowerment. I
think we would be great to start with talking about
Julie and what she did and is doing when it
(19:30):
comes to how she's using her CIDP diagnosis to really
advocate for others.
Speaker 6 (19:38):
I didn't write it because I wanted to become rich
and famous. I wrote it because I knew there was
a need, and we donated the book to the GBS
and CIDP Foundation, and we wanted it to be available
for parents or children or families of individuals that have CIDP.
Speaker 3 (19:56):
I think that it has.
Speaker 6 (19:57):
Basically empowered my resilience by allowing me to know that
I am a productive member of society, that just because
I have this disease, I still am able to teach others.
I'm able to help others with the disease get through
those rough days and to help them navigate through the
(20:18):
system of insurance and whatnot that I've had to navigate through,
or to help individuals who might be having difficulties zipping
their pants and saying, hey, have you tried this? You
know so, I think it's just helped me all the
way around to help others, And that's kind of been
my main thing, is to know that I can still
(20:40):
do things and feel like I've accomplished something. I felt
that when I was teaching full time, but now I'm
able to still feel that accomplishment when I'm helping others
make their lives easier.
Speaker 2 (20:56):
Julie's a very special lady, and she just has continually
been helping the community and really support others in multiple ways.
Speaker 3 (21:06):
Julie is awesome. She was talking about the children's book
that she wrote called Breeze Just Like Me, which was
about life with CIDP and helping to explain that condition
to others, and just in that service of writing this
children's book and distributing it to everybody who needs it
is really, I mean, such a selfless act. And something
(21:27):
that I can imagine just has helped a lot of people.
Speaker 2 (21:30):
Absolutely. Next, we're going to hear from Morgan, who is
another one of our guests who found hope through advocacy
and her community.
Speaker 1 (21:41):
I just remember after one hospital, say, just feeling so
hopeless and breaking down and just being such despair, Like fine,
when I give up. And at that point, I decided
to be a recluse, and I completely shut myself out
from the world. So all I did every day I
woke up, I went to work, I came home, and
(22:03):
I'm like I said, I bought a three level town
home and my bedroom was on the third level. I
couldn't even make it up my stairs to go to
my room. So every day when I came in, I
just had to lay in like my sitting area for hours,
take a nap, and I would just sometimes stay there
till nine o'clock at night and then finally make my
way up the stairs. But like, I just reclused because
I had given up, because I just felt like, what's
(22:25):
the point if I try to do anything. My body's
fighting against me. This is my new reality. Mynew reality
is nothingness, and all I have is work.
Speaker 2 (22:34):
Right now, I was like.
Speaker 1 (22:36):
What if I can use this my pain because I
was in a lot of pain and help other people.
And so I started blogging, and you know, I slowly
found my community, people of other even if it wasn't mGy,
just people with other autoimmune illnesses, my age, who could
relate to some of the things, some of the worries,
(22:58):
some of the outlooks that we were all facing, and
just build this little, small, little community. It's been great.
Speaker 2 (23:06):
It's amazing the technology of blogging and having it available
so other people can engage with you and create that
community that she's talking about, because you know that through
that she's helped many, many.
Speaker 3 (23:18):
People absolutely, and think about how she very vividly describes
how dark those moments were for her. Plus remember Morgan
was only twenty five when she was diagnosed, which, if
you think about it, only adds to the stress and
confusion of her situation. And even to take that, like
I said, the ability, the time right to be able
(23:40):
to just process that, to go through that. But then
somewhere somewhere in you is so I was saying, like,
you know what, no, this is not the end for me.
I'm going to use this to be able to help others.
And I'm going to create something and put that out
in the world and connect to others. If that is
not the definition of hope, I don't know what is.
And so let's go back to Craig, and I think
(24:00):
Craig also has a really great way. You know, as
we were just talking about using technology, using the storytelling
to be able to communicate and to advocate for others,
and so, as you may or remember, he learned about
CIDV on YouTube and so this then inspired his own channel,
No Egg Craig.
Speaker 4 (24:23):
I started because when I first got diagnosed, I went home,
I went on YouTube. That was like the first thing
I did, and there was almost no videos about it.
And I was like, Okay, when I get better, I'm
going to make an entire channel dedicated this so that
then when somebody else gets diagnosed they don't feel so alone.
Speaker 3 (24:38):
And he did.
Speaker 2 (24:40):
He did. Yes, that takes a lot of inspiration. What's
interesting to me is how much information is out there
and it's still difficult to find for individuals. So him
just creating this, I'm sure it's helpful. And the more
ways that people can find information and meet others that
may have the same diagnosis.
Speaker 3 (25:01):
To me, Kathy, this really highlights the idea of storytelling
like we were talking about earlier, Right, Yes, for Craig
to be able to not only share his story in
written form, but you know, to have it be like
you're seeing his face, you're seeing what he's going through,
You're connecting to him as a person with CIDP like
that also is very powerful because, like you said, you
(25:22):
might go through your life and never meet a physical
person who has your same condition. But to be able
to see them and to kind of get into a
relationship right with these people is very meaningful. It is
we also know that there are many different ways to
be able to connect people and their stories, whether that's interpersonally,
(25:43):
through YouTube or through larger organizations. So next we're going
to hear from Dana and she had some frustrations for
sure with her CIDP diagnosis and experiences, but she definitely
discovered to be able to help others to avoid the
same struggles she experienced. Let's Helliston.
Speaker 7 (26:08):
Working with the GBSCIDP Foundation. I have had the good
fortune to be the liaison that can go to a
hospital when someone has just been diagnosed with either GBS
or CIDP and meet with the patient or meet with
their families to show them that this is not a
life ending disease. This is the beginning of the next chapter.
(26:32):
So what we do after diagnosis is not only medically
but personally. You know, psychologically, whether or not it means
getting into therapy, whether or not it means, you know,
joining support groups, whether or not it means becoming a liaison.
I will always continue to work in this facet because
(26:54):
the foundation really saved my life because it got me
talking to other people. I mean when I get together
with my friends and I don't have to even like
sometimes you don't even have to say a word. They
know you're not having a good day. And by the way,
part of the thing I do is I'm also part
of Bridge the Gap, which is helping to educate doctors
(27:15):
on this disease, regular GPS, grumatologists, people that don't specialize
in neurological or autoimmune diseases.
Speaker 3 (27:26):
And that's huge to be able to again take your
experience and not just talk to other people, but to
really level that up and to say I'm going to
educate physicians.
Speaker 2 (27:36):
I'm so impressed that she has been able to do
that and also that the foundation started that program. It's
so important that other healthcare professionals can hear, maybe not
from the patient that they're currently treating, but a different
patient who can share with them in a different way
their experience, because the relationship between a patient and physician
(27:58):
quite often is focused on certain things and it sometimes
takes that third voice to help inform.
Speaker 3 (28:06):
And that's exactly what Dana's doing with the gbs CIDP
Foundation to be able to take her experiences and bring
that to an audience of people who are really just
hungry for that kind of understanding, experience and really advocacy.
Speaker 2 (28:26):
Right right next, we're going to hear from Tony, who
was thinking very very practically, and I was so interested
in the way that he really is advocating and helping
others to advocate for themselves.
Speaker 3 (28:38):
Yeah, and something I found really cool was his excitement
for sharing what he calls a blue card, which displays
a list of medications that folks with MG should not
take so you can bring it to places like the pharmacy.
As you'll hear, he shares copies of the card as
a simple resource that people can carry around.
Speaker 5 (28:57):
If I come across somebody on the Facebook, I'll respond,
you know, you have to one always be positive because
somebody is always worse off than you are. That's been
my whole attitude ever since I had this disease. There's
somebody worse off than I am. I speak to them
and I'll send them the blue card. This is a
list of medications that can take and you know very often,
(29:20):
you know, thank you very much because their doctors don't know.
Speaker 2 (29:26):
It was very special to have Tony and Catherine from
Canada participate in this season. But he was thinking very
practically because he knew that he had a situation in
a pharmacy where he had an understanding of something he
probably should not be taking and needed to inform the
pharmacist and other individuals. I think such a practical thing,
(29:46):
but so very helpful to the community for him to
be handing out the blue cards.
Speaker 3 (29:52):
Yeah, literally, like here is my blue card, you know,
and like you said, super practical but so helpful. As
our conversation came to a close, Kathy and I really
solidify hope as just a starting point, recognizing that what
brings one person hope maybe the spark that ignites it
for someone else. Let's listen to Tasha Craig, Julie Morgan, Tony,
(30:16):
and Dana share the sources of hope that motivate them
to keep going.
Speaker 1 (30:23):
My life gives me hope, my family.
Speaker 2 (30:26):
My son.
Speaker 4 (30:28):
I definitely have hope for me and then also for
like a lot of like medical interventions.
Speaker 6 (30:33):
I'm taking my disability and using it to help others.
Speaker 1 (30:39):
I would love to do more work with Spoonies and
in the community and just continue to you know, spread
light and uplift others.
Speaker 5 (30:50):
I am still up and standing. No cain, no walker,
no wheelchair.
Speaker 7 (30:56):
I'm hope. I had an infusion in six months.
Speaker 3 (31:00):
What is your hope? I think one of the things
that I've certainly gotten out of listening to our guests
this season is that you might be giving some things up,
but you have a very strong possibility of gaining hope
for your new life and the new circumstances and people
(31:22):
that you're going to experience.
Speaker 2 (31:24):
Yes, and just for.
Speaker 3 (31:26):
Me personally, it makes me extremely grateful to be able
to hear their stories and the power behind those stories,
and to remind everyone to really hold on to hope
and to look forward.
Speaker 2 (31:38):
I join you in being extremely grateful to hear them
and to be able to share the stories as widely
and broadly as we possibly can, and to include more
guests and help all of them learn how to tell
their story and whatever that way is.
Speaker 3 (31:55):
I want to ask you before we go, what hope
do you have for the future of MG and CIDP
and those living with these conditions.
Speaker 2 (32:05):
What I think about the most for these two communities
is that individuals that are living with an MG or
a CIDP diagnosis will find the community whatever that is
for them. And I'm so hopeful. We live in a
very wonderful time where there's a lot of innovation happening,
and whether it's innovation around just medical technology, it's the
(32:29):
ability to have virtual health visits. There's some very simple
things that we didn't have several years ago, and we're
watching it all happen right before our eyes.
Speaker 3 (32:40):
What a beautiful note. Tet and Kathy, thank you so
much again for being here.
Speaker 2 (32:45):
Well, thank you so much for your dedication and for
season three.
Speaker 3 (32:53):
As we wrap up this season, I want to take
a moment to thank each of our guests for sharing
their stories. I hope that these conversations have reminded you
as they continue to remind me that in challenging times,
finding hope and holding on to it is essential. I'm
already looking forward to exploring more untold stories and the
(33:13):
incredible discussions ahead. In the meantime, I'd love to hear
about your experiences share them with me on social media.
For more support and inspiration, check out Shining through CIDP
at SHININGTHROUGHCIDP dot com and MG United at Mgdashunited dot com.
Thank you for being part of this journey. Let's keep
(33:34):
hope alive together. Untold Stories Life with a Severe Autoimmune
Condition is produced by Ruby Studio from iHeartMedia in partnership
with Argenis and hosted by me Martin Hackett. Our executive
producer is Malisosha. Our EP of Post production is Matt Stillo,
along with supervising producer Sierra Kaiser and post producer Sierra Spreen.
(33:57):
This episode was written by Diana Davis.
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