October 1, 2025 • 26 mins
Lea was just 12 when her symptoms began, but six years passed before doctors finally gave her an MG diagnosis. In that time, she lost the ability to walk, speak, and swallow, yet never lost her determination to live fully. Join Martine as Lea shares her journey from Germany and how the fight to find a diagnosis crosses every border.
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Speaker 1 (00:08):
Welcome back. Today, we continue this season's focus on resilience,
advocacy and the long road to diagnosis for those living
with autoimmune conditions. Whether it's MG or CIDP, the path
to diagnosis is rarely straightforward, and as you'll hear today,
that holds true across countries and cultures alike. Joining us
(00:29):
is Leah Mitteldorf, a twenty one year old from Germany
living with mayasthenia gravis. Her journey began at the young
age of twelve. For years, her symptoms were dismissed as
lingering effects of a bike accident, and while her accident
was very serious, the debilitating weakness, difficulty walking, speaking, and
swallowing were signs of something much deeper. It marked the
(00:53):
beginning of a six year search for answers. Leah's story
is a powerful example of relentless strength, an unwavering determination,
and the critical whole family can play when everything else
feels hopeless. Let's meet her now, Leah. It's so great
to meet you. Thank you so much for coming on today.
Speaker 2 (01:14):
Hi, I'm so happy to be here.
Speaker 1 (01:16):
Leah. You were just twelve years old when your symptoms began.
What was it like to be so young and to
experience this.
Speaker 2 (01:26):
It was a very rough time. I was always a healthy,
active and fit child, and at a moment the accident happened,
when I got hit by a car, everything changed and
I never felt like the kid I was before ever.
Speaker 1 (01:41):
Again, the symptoms were not related to the accident, but
that's when it began. Around that same time.
Speaker 2 (01:48):
Yes, I started developing symptoms I never had before, and
to feel weak all the time, even in the morning
after I got up. So I think that's why my
diagnosis was also very different and difficult. And the doctors
were completely focused on treating my physical injuries from the accident,
which of course made sense in the beginning because I
(02:09):
had multiple injuries and they needed attention. But they always
sought me in four to six weeks, maybe eight, and
you will feel better again. But I always waited for
the day that everything is good again.
Speaker 1 (02:21):
Yeah, so people kind of were always trying to associate
how you were feeling with what happened to you with
the car accident. And you were twelve years old. You
know what was it like trying to make sense of
what was happening to your body.
Speaker 2 (02:35):
It was very hard to accept that your body isn't
working normally, and the symptoms kept getting worse and nothing improved.
And when you're twelve, you didn't knew what was going on.
And I was also very scared of my body. I
couldn't do things and just laid in bed and couldn't breathe.
Speaker 1 (02:56):
What were some of the symptoms that you were feeling? Then?
Speaker 2 (02:59):
At first I I felt a very strong weakness in
my limbs and couldn't walk on my own or my
arms were very weak. And shortly after that, the breathing
difficulties came up, and the swallowing problem, so I choked
on everything, drinking food, everything, and then the dropping eyelid
(03:21):
came last.
Speaker 1 (03:22):
Yeah, I mean this is not like just oh small pain, right,
this is like very serious, Like listen to me. Did
you ever question yourself?
Speaker 2 (03:32):
At some point? I questioned if I'm really sick or
if I'm faking it because they couldn't find something. But
I felt very weak and not good.
Speaker 1 (03:43):
So you had problems with walking, with swallowing, with breathing.
What do you remember about those moments?
Speaker 2 (03:50):
I know that I was always used to help from others,
and I couldn't do things alone. I couldn't do sports.
I couldn't walk, I couldn't stand on my own, and
even opening a bottle of water was difficult for me,
and drinking eating everything like things that keep you alive
(04:11):
was very hard for me.
Speaker 1 (04:13):
Leah, at one point, your symptoms were so bad that
you were hospitalized in the ICU unit. Gosh, can you
tell us about that experience.
Speaker 2 (04:24):
This experience was very terrifying physically and emotionally because my
whole muscle grooves and my body were completely paralyzed. I
couldn't walk, I couldn't move my arms, and my face
fl completely frozen. Even speaking was very hard, and I
couldn't breathe on my own anymore. I went into respiratory failure,
(04:47):
so my oxygen level dropped below seventy percent and I
became oxygen independent and had to be ventilated. But I
showed how serious this illness is, a how unpredictable it
can be.
Speaker 1 (05:02):
Yeah, Lee, how long did it take for you to
get a diagnosis after your accident?
Speaker 2 (05:08):
From the very first symptoms to finally getting diagnosed. It
took almost six years. And I think this is where
the worst years of my life. Suddenly I couldn't do
anything I used to and my life turned completely upside.
Speaker 1 (05:22):
Down, and your mother was by your side right the
entire time. What did her support mean to you?
Speaker 2 (05:29):
She fought for me when I couldn't fight for myself.
She always told me to stand up for myself and
to say what I feel, and to never doubt things
I experienced in my body because I'm the only one
that knows what is going on in my body. The
doctors can feel the feeling I felt, so I think
without her, I don't think I would be here today. Hmm.
Speaker 1 (05:53):
How did it feel to finally have a diagnosis.
Speaker 2 (05:57):
It felt good because I knew what I have and
how I can fight against it and what I can
do with medication and therapy. But it also made me
very anxious because I knew for the future it won't
go away. I have to learn how to live with it.
Speaker 1 (06:16):
Yeah, and now you have a way to understand what
it is that you're going through and to have proof
basically that it's not just all in your head.
Speaker 2 (06:23):
Yeah.
Speaker 1 (06:24):
How did it feel to finally connect with the right doctor.
Speaker 2 (06:28):
It was very relieving from all the things I experienced,
because when I found a doctor who brand the tests
I needed and give me the therapy I need. It
was a big relief so I could start my journey.
Speaker 1 (06:43):
Yeah, and to say now I can begin to look
at what's next on this journey.
Speaker 2 (06:48):
Yeah.
Speaker 1 (06:48):
Once you had that MG diagnosis, what were some of
the challenges or strengths that you experienced as a young
person with a rare condition?
Speaker 2 (06:58):
Chaon just were like seeing how my friends lived their
lives normally and I never was the normal teenager. My
whole teenage life was on my therapy and diagnosis. I
never experienced going to parties or staying out, laid, all
the sports, all the friends, everything left my life. I
(07:20):
always had a lot of friends, but when accident happened,
friends and family members just left me alone or just
left my life and never came back. Maybe because I
was less fun to be around. I couldn't do many
things I could do before. But to see how many
people left because you're ill and just don't know how
(07:44):
to be around you, it's very hard.
Speaker 1 (07:47):
And during this time, what support did you find when
you were coming to terms with this new diagnosis? Could
you talk a little bit about that. I got support
from my neurologist. She was the only one who took
me serious at first, and gave me everything I needed
in this journey, and also my family was there also
(08:10):
a few friends that stayed by my side and always
just in little things like a kind message or they
visited me at home modern hospitals as these were the
things I really appreciated. Yeah, so it sounds like people
who were willing to spend time with you and just
to be present was a.
Speaker 2 (08:28):
Gift and just accept how I am.
Speaker 1 (08:31):
Yeah, and realized this is who I am now and
love it or leave it right? This is it? And
did you connect with any online resources or support.
Speaker 2 (08:42):
Groups after my diagnosis? I found on social media many friends.
So we write about our illness and give tips to another.
So when one finds out a way to live a
better life, they say it to me, or when I
find something that helps me, I can say to them,
(09:04):
and we help each other. And to make the illness
more public writing with them and feel don't feel understood
is a very important thing.
Speaker 1 (09:15):
Yeah, and especially when you're connecting with people that are,
you know, close in age to you. How did it
feel to connect with other people your age with MG?
Speaker 2 (09:24):
I felt understood because I saw that I'm not the
only one who suffered from these experiences and who has
this illness in a young age, and when you write
with them, you just feel connected and understood.
Speaker 1 (09:37):
Yeah, it's amazing, and you know, because, like you said,
having a rare condition, it can feel like nobody else
is going through this, and so to have the tool
that we have right with social media, to connect to
people around the world, it makes you feel like part
of a larger group.
Speaker 2 (09:53):
Especially when you have an illness you're never heard before
because it's so rare, and then you find people who
also suffer from this illness.
Speaker 1 (10:00):
And you kind of need each other, right because everybody
understands what they're going through.
Speaker 2 (10:05):
Yeah.
Speaker 1 (10:07):
What's important to note here is that while MG and
all illnesses cross borders no matter where you live, the
experience of fighting to find a diagnosis and the relief
of finding someone who understands is universal. How would you
describe the awareness of MG amongst the healthcare professionals and
(10:29):
just basically the general public in Germany?
Speaker 2 (10:32):
I think too many people don't know about his illness
or understand what's behind the illness, or some doctors that
never heard about the illness. Yeah, I think the awareness
is way too less. But also in the society I
don't think people know about his illness because it's a
rare disease. And even when you would try to explain
(10:54):
to the people that you have very severe master weakness
and things, they sometimes don't believe you because they saw
you walking, but now you're on the mobility aid, so
they question how it could be good yesterday but now
you can't walk or now you can swallow?
Speaker 1 (11:12):
Yeah, because it can be an invisible condition, right yeah,
from the outside, but like you said, in your body
it's like, you know, this is how you feel today,
but tomorrow it could be something different. And I'm also thinking,
do you find yourself just you know, informing people about
the condition.
Speaker 2 (11:29):
I try my best because I think it's very important
to spread awareness because many people suffer from it, but
nobody really understand how this illness works. And I try
to spread awareness and give information, especially when I'm on
a parking spot for disabled people and they ask why
are you standing on the spot and you have to
(11:52):
always explain yourself and it's very exhausting.
Speaker 1 (11:56):
Wow, And so it sounds like the awareness in Germany
definitely needs to be increased about my stheniogravis to let
more people know whether you're in Germany, the US, or
anywhere else, that gap between symptoms and answers can feel
like an invisible border. Lea's story reminds us that across
(12:19):
all countries, cultures, and healthcare systems, the fight to be seen, believed,
and diagnosed on time is a universal one. You mentioned,
Leah that there are days when your body just doesn't
let you do much. How do you care for yourself
physically and emotionally on those days?
Speaker 2 (12:41):
You have to rest a lot and give your permission
to rest. So when you try to fight against a body,
the symptoms for just worse and your recovery process will
take much longer.
Speaker 1 (12:55):
Yeah. So that's such a lesson to learn so young, right,
that some times you need to rest, and that you
think you're doing nothing, but your body's healing while that's happening,
and that's extremely important.
Speaker 2 (13:09):
Yes, Egil, when you want to do things you just can't,
otherwise your breathing could stop audio things.
Speaker 1 (13:16):
Yeah, and just accepting that, you know, which is trust
me hard at any age, but I can imagine for
someone so young just that much more frustrating.
Speaker 2 (13:25):
Yeah.
Speaker 1 (13:29):
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 conditions. Urgenics is
dedicated to serving the myasthenia gravis or MG community through
MG United. MG United was created by Ergenics to empower
(13:51):
the MG community by providing the latest information, resources, and
support to address the unique ways MG can affect their lives.
It also helps you connect with the community and see
real stories of real people living with MG wherever you
are in your mayasthenia gravist journey. MG united wants to
help make today a better day. For more information about
(14:11):
MG United, visit mg dash united dot com. And now
back to untold stories. Leah, you mentioned used to do
(14:32):
gymnastics and other sports when you were younger. What helped
you find new ways of joy and connection now after
you've been diagnosed.
Speaker 2 (14:43):
It took a very long way until I accept that
I couldn't do the sports anymore because it was my
passion and I thought I couldn't live without them, and
then I thought, Okay, I have to find something else
to make me happy. And then I started to crow
or to read and all these things you can do
(15:03):
without being too active when your muscles are weak, so
you try to find new ways to live and to
find joy in living even if you're sick and can
do the things. But yeah, I think it's very important
to always find things that keeps you happy in life.
Speaker 1 (15:23):
It sounds like you like really were trying to force
yourself to go back to those things because you love them.
Like you said, this was things that brought you joy
to do these sports and then to have that be
taken away I can imagine was very hard. But it
sounds like you have realized that there are things that
you can do when you're resting, and so you mentioned crochet, which,
(15:45):
let me tell you something, I have gotten many of
crochet kit and it's still I can't do it. And
so that's it's very impressive that you're able to do
that and to stick with it. But do you find
doing these kinds of things are out full?
Speaker 2 (16:01):
I think so because you find something, you will see
progress and find joy in it and you not just
lay in bed and be sad all the time because
you can do things.
Speaker 1 (16:12):
Yeah, and it sounds like you know you do have
good days right as well? And what do you enjoy
on those days when you feel good?
Speaker 2 (16:22):
I enjoyed that I can walk on my own or
meet friends and sometimes go shopping. Or also when the
sun is shining, I really like to go outside and
just sit there. Or I love animals, so my rabbits
are also outside and I love to go to them
and just pet them.
Speaker 1 (16:44):
Yeah, because I missed you, right, you haven't seen you
in a while.
Speaker 2 (16:48):
Yes, Also, like eating is something very special to me
because I couldn't eat for a very long time, and
now when it's sought outside and you can just eat
ice cream or it's very it makes me happy.
Speaker 1 (17:04):
What I love so much about this part of Leah's
story is that it doesn't matter what language you speak.
The little things don't need translation. The joy of eating
ice cream on a hot day, or just being able
to walk outside, that feeling is the same everywhere on
every part of the planet. You mentioned school, Leah being
(17:26):
challenging for you because of times when you just couldn't
be there and so you had to leave early and
give up some of that independence. Do you feel like
that is a part of your life that you've ever
grieved or recognized that you have had that loss.
Speaker 2 (17:44):
It was very challenging when the time was where I
was kicked out of school and was bullied from teachers
and students. But after that I grieved a long time.
I think so a year, But now I think I'm
very happy and grateful for what I reached, even with
(18:06):
my problems and my illness, and I never have to
see them again, so it's okay.
Speaker 1 (18:12):
See you later bye. Yeah. So I mean, but that
sounds like that was that was a real process that
you had to go through to really sort of I mean,
it sounds terrible too, that the teachers were and the
kids were bullying you. I'm so sorry, and it's again
it goes back to people just really not understanding, you know,
(18:34):
and not just taking a moment to actually ask you
and to learn about like what it is that you're
going through and to listen. But it sounds like it
took time for you to really kind of process that.
Speaker 2 (18:47):
Yeah, because it all started after the accident. Before that,
I had a lot of friends and I had never
problems with people. But since the moment of the accident,
everything changed and I had to change schools twice, and
every time it was okay at the beginning, and then
it kept getting worse and I get fullid and they
(19:09):
also questioned if I'm really sick. So that was a
big part of my journey that everyone always said it's
psychological or you're faking it.
Speaker 1 (19:18):
Thinking back to that twelve year old version of you,
what would you want that twelve year old self to
know about who you are today?
Speaker 2 (19:28):
I would show her how strong she is even in
the age of twelve, and how she kept fighting for
her life and kept fighting through school and got her
highest school graduation so for university and trades and everything
she never thought she would reach. And that she had
(19:49):
found her real friends that stayed by her side and
always try to be very good friends and help through
hard times. All these things.
Speaker 1 (20:00):
Yeah, and that she would turn out to be a
pretty cool person. Right, It's like, you know it's going
to be okay. Yeah, that's amazing. And so Leah, how
would you define strength now? And is it different from
what you thought about strength before you had MG.
Speaker 2 (20:17):
When I was younger, I thought strength is when you're
strong in your body, so you reach goals in sport.
But now I know that mentally strength is a bit
more important than the physical strength, because when you are
strong in your head, then you can achieve everything you
want to achieve. So I would say strength is to
(20:41):
be strong for yourself and to keep fighting and pushing.
Speaker 1 (20:45):
Yeah, and it's amazing because that mental strength, like you said,
is really what's going to keep you throughout your whole life.
Speaker 2 (20:52):
Yeah.
Speaker 1 (20:53):
What advice would you give to someone who is newly
diagnosed with a rare or misund stood condition like MG.
Speaker 2 (21:02):
The really trust yourself and believe in what your body's
telling you and never dubbed yourself. You know your body
better than everyone around you, and surround yourself with people
who truly care about you and make you feel safe.
And even if it's just one or two people, I
would always say to advocate for yourself in a healthcare system,
(21:25):
so ask questions, put for answers, and don't be afraid
to get a second or third opinion if something doesn't
feel right. And I would say remember that it's okay
to rest and set boundaries. So your health has to
come first always, and you can still live a meaningful
and fulfilling life, but you have to give yourself the kindness, patience,
(21:48):
and trust in yourself that you deserve.
Speaker 1 (21:50):
It's amazing, Leah, great advice for anybody, for sure, but
I think those sound like really hard earned lessons from you,
you know, especially the piece around advocating and trusting what's
happening in your body. And it sounds like your mom
also too, is a real help and influence to make
you kind of get to where you are now. And
so you're kind of like passing that along now right
(22:12):
to others who are newly diagnosed. And so after learning
so much about how to live with MG as you
have for now, you know, such a long period of
your young life, what do you wish you knew when
you were first diagnosed.
Speaker 2 (22:27):
I wish I just got more information. I didn't really
know that I have to set limits for myself, or
that it's okay to ask for help and to use
the mobility aids and other stuff you need to live.
I had to research everything in the internet and to
teach myself about the illness. And yeah, then I figured
(22:50):
out how serious this illness is.
Speaker 1 (22:52):
And you got through it, and now you're on the
side of it where you can use what it is
that you have learned pass that along to others. Well, yeah, Leah,
you said it can get better. If you think it
can get better, can you tell us more about that
positive attitude?
Speaker 2 (23:09):
I think it's important to have a positive mindset because
when you're always said and always think, I'm sick and
it can get better, and just laying in bed all
the time, you lose muscles, and you lose hope and
everything that keeps you alive and pushes you to fight
for your health and to reach goals you can reach
(23:31):
even with the illness. So I think it's very important
to be happy even if you're sick, and to find
things that makes you happy and when you feel better,
to do the things you can do and not just
laying in bed and say I'm sick, I can't do something.
Speaker 1 (23:48):
Yeah, And that's what you're saying, is like to have
that attitude is something that affects your physical health as well.
And so it's not just like, oh, just have a
positive mind, but it really is a way to help
yourself heal because it's.
Speaker 2 (24:05):
Also when you feel bad, your mindset can get better,
and then your physical health gets worse. So you need
to think positive to feel more positive in your body
and to achieve goals who can reach.
Speaker 1 (24:21):
And your proof of that right because by having that
positive attitude, you have been able to meet some of
your goals and to continue to support people. And I
think that you mentioned again about you know, just talking,
we can always keep talking about your mom. You said,
you know your mom has been a rock for you.
Can you talk about how she's helped and supported you
along the way.
Speaker 2 (24:42):
I think the biggest support from her was that she
always believed me and always stayed on my side. She
was the strongest and most constant support of myself in
this journey, and she fought for me and I couldn't
fight for myself, and she did everything to keep me
alive and to random test, I need.
Speaker 1 (25:02):
Yeah, shout out for mom. I mean, that's amazing, right,
and again especially when you know, like you said, she
was even being accused of not telling the truth about
what's happening. So this is amazing to be able to
have mom, to be able to continue to support you. Yeah, Leah,
thank you so much for your time and energy and
your spirit today. It has been amazing talking to you.
(25:23):
Thank you so much.
Speaker 2 (25:24):
Thank you, it was very amazing. I was ensited a lot.
Speaker 1 (25:32):
Lea's story is such a strong reminder that no matter
where you are in the world, it's resilience, honesty, and
the people around you that help you through the fight
to be seen. It's universal, and so is the strength
that it takes to keep going. Thanks for listening to
this episode of Untold Stories, and this marks the end
(25:53):
of season four. We'll be back soon with more Untold Stories.
But in the meantime, if Lea's story resonated with you,
share it with someone in your MG circle, and if
you have a moment, please rate and review the show
on your favorite podcast app. Untold Stories Life with the
(26:13):
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
in partnership with Argenix, and hosted by me Martine Hackett.
Our executive producer is Yvonne Shehan. Our producer is Leah Sutherland.
This episode was written and produced by Diana Davis. Post
production for this season is by Tom Sullivan and Paul
Viteleans of Audiography.
Welcome back. Today, we continue this season's focus on resilience,
advocacy and the long road to diagnosis for those living
with autoimmune conditions. Whether it's MG or CIDP, the path
to diagnosis is rarely straightforward, and as you'll hear today,
that holds true across countries and cultures alike. Joining us
(00:29):
is Leah Mitteldorf, a twenty one year old from Germany
living with mayasthenia gravis. Her journey began at the young
age of twelve. For years, her symptoms were dismissed as
lingering effects of a bike accident, and while her accident
was very serious, the debilitating weakness, difficulty walking, speaking, and
swallowing were signs of something much deeper. It marked the
(00:53):
beginning of a six year search for answers. Leah's story
is a powerful example of relentless strength, an unwavering determination,
and the critical whole family can play when everything else
feels hopeless. Let's meet her now, Leah. It's so great
to meet you. Thank you so much for coming on today.
Speaker 2 (01:14):
Hi, I'm so happy to be here.
Speaker 1 (01:16):
Leah. You were just twelve years old when your symptoms began.
What was it like to be so young and to
experience this.
Speaker 2 (01:26):
It was a very rough time. I was always a healthy,
active and fit child, and at a moment the accident happened,
when I got hit by a car, everything changed and
I never felt like the kid I was before ever.
Speaker 1 (01:41):
Again, the symptoms were not related to the accident, but
that's when it began. Around that same time.
Speaker 2 (01:48):
Yes, I started developing symptoms I never had before, and
to feel weak all the time, even in the morning
after I got up. So I think that's why my
diagnosis was also very different and difficult. And the doctors
were completely focused on treating my physical injuries from the accident,
which of course made sense in the beginning because I
(02:09):
had multiple injuries and they needed attention. But they always
sought me in four to six weeks, maybe eight, and
you will feel better again. But I always waited for
the day that everything is good again.
Speaker 1 (02:21):
Yeah, so people kind of were always trying to associate
how you were feeling with what happened to you with
the car accident. And you were twelve years old. You
know what was it like trying to make sense of
what was happening to your body.
Speaker 2 (02:35):
It was very hard to accept that your body isn't
working normally, and the symptoms kept getting worse and nothing improved.
And when you're twelve, you didn't knew what was going on.
And I was also very scared of my body. I
couldn't do things and just laid in bed and couldn't breathe.
Speaker 1 (02:56):
What were some of the symptoms that you were feeling? Then?
Speaker 2 (02:59):
At first I I felt a very strong weakness in
my limbs and couldn't walk on my own or my
arms were very weak. And shortly after that, the breathing
difficulties came up, and the swallowing problem, so I choked
on everything, drinking food, everything, and then the dropping eyelid
(03:21):
came last.
Speaker 1 (03:22):
Yeah, I mean this is not like just oh small pain, right,
this is like very serious, Like listen to me. Did
you ever question yourself?
Speaker 2 (03:32):
At some point? I questioned if I'm really sick or
if I'm faking it because they couldn't find something. But
I felt very weak and not good.
Speaker 1 (03:43):
So you had problems with walking, with swallowing, with breathing.
What do you remember about those moments?
Speaker 2 (03:50):
I know that I was always used to help from others,
and I couldn't do things alone. I couldn't do sports.
I couldn't walk, I couldn't stand on my own, and
even opening a bottle of water was difficult for me,
and drinking eating everything like things that keep you alive
(04:11):
was very hard for me.
Speaker 1 (04:13):
Leah, at one point, your symptoms were so bad that
you were hospitalized in the ICU unit. Gosh, can you
tell us about that experience.
Speaker 2 (04:24):
This experience was very terrifying physically and emotionally because my
whole muscle grooves and my body were completely paralyzed. I
couldn't walk, I couldn't move my arms, and my face
fl completely frozen. Even speaking was very hard, and I
couldn't breathe on my own anymore. I went into respiratory failure,
(04:47):
so my oxygen level dropped below seventy percent and I
became oxygen independent and had to be ventilated. But I
showed how serious this illness is, a how unpredictable it
can be.
Speaker 1 (05:02):
Yeah, Lee, how long did it take for you to
get a diagnosis after your accident?
Speaker 2 (05:08):
From the very first symptoms to finally getting diagnosed. It
took almost six years. And I think this is where
the worst years of my life. Suddenly I couldn't do
anything I used to and my life turned completely upside.
Speaker 1 (05:22):
Down, and your mother was by your side right the
entire time. What did her support mean to you?
Speaker 2 (05:29):
She fought for me when I couldn't fight for myself.
She always told me to stand up for myself and
to say what I feel, and to never doubt things
I experienced in my body because I'm the only one
that knows what is going on in my body. The
doctors can feel the feeling I felt, so I think
without her, I don't think I would be here today. Hmm.
Speaker 1 (05:53):
How did it feel to finally have a diagnosis.
Speaker 2 (05:57):
It felt good because I knew what I have and
how I can fight against it and what I can
do with medication and therapy. But it also made me
very anxious because I knew for the future it won't
go away. I have to learn how to live with it.
Speaker 1 (06:16):
Yeah, and now you have a way to understand what
it is that you're going through and to have proof
basically that it's not just all in your head.
Speaker 2 (06:23):
Yeah.
Speaker 1 (06:24):
How did it feel to finally connect with the right doctor.
Speaker 2 (06:28):
It was very relieving from all the things I experienced,
because when I found a doctor who brand the tests
I needed and give me the therapy I need. It
was a big relief so I could start my journey.
Speaker 1 (06:43):
Yeah, and to say now I can begin to look
at what's next on this journey.
Speaker 2 (06:48):
Yeah.
Speaker 1 (06:48):
Once you had that MG diagnosis, what were some of
the challenges or strengths that you experienced as a young
person with a rare condition?
Speaker 2 (06:58):
Chaon just were like seeing how my friends lived their
lives normally and I never was the normal teenager. My
whole teenage life was on my therapy and diagnosis. I
never experienced going to parties or staying out, laid, all
the sports, all the friends, everything left my life. I
(07:20):
always had a lot of friends, but when accident happened,
friends and family members just left me alone or just
left my life and never came back. Maybe because I
was less fun to be around. I couldn't do many
things I could do before. But to see how many
people left because you're ill and just don't know how
(07:44):
to be around you, it's very hard.
Speaker 1 (07:47):
And during this time, what support did you find when
you were coming to terms with this new diagnosis? Could
you talk a little bit about that. I got support
from my neurologist. She was the only one who took
me serious at first, and gave me everything I needed
in this journey, and also my family was there also
(08:10):
a few friends that stayed by my side and always
just in little things like a kind message or they
visited me at home modern hospitals as these were the
things I really appreciated. Yeah, so it sounds like people
who were willing to spend time with you and just
to be present was a.
Speaker 2 (08:28):
Gift and just accept how I am.
Speaker 1 (08:31):
Yeah, and realized this is who I am now and
love it or leave it right? This is it? And
did you connect with any online resources or support.
Speaker 2 (08:42):
Groups after my diagnosis? I found on social media many friends.
So we write about our illness and give tips to another.
So when one finds out a way to live a
better life, they say it to me, or when I
find something that helps me, I can say to them,
(09:04):
and we help each other. And to make the illness
more public writing with them and feel don't feel understood
is a very important thing.
Speaker 1 (09:15):
Yeah, and especially when you're connecting with people that are,
you know, close in age to you. How did it
feel to connect with other people your age with MG?
Speaker 2 (09:24):
I felt understood because I saw that I'm not the
only one who suffered from these experiences and who has
this illness in a young age, and when you write
with them, you just feel connected and understood.
Speaker 1 (09:37):
Yeah, it's amazing, and you know, because, like you said,
having a rare condition, it can feel like nobody else
is going through this, and so to have the tool
that we have right with social media, to connect to
people around the world, it makes you feel like part
of a larger group.
Speaker 2 (09:53):
Especially when you have an illness you're never heard before
because it's so rare, and then you find people who
also suffer from this illness.
Speaker 1 (10:00):
And you kind of need each other, right because everybody
understands what they're going through.
Speaker 2 (10:05):
Yeah.
Speaker 1 (10:07):
What's important to note here is that while MG and
all illnesses cross borders no matter where you live, the
experience of fighting to find a diagnosis and the relief
of finding someone who understands is universal. How would you
describe the awareness of MG amongst the healthcare professionals and
(10:29):
just basically the general public in Germany?
Speaker 2 (10:32):
I think too many people don't know about his illness
or understand what's behind the illness, or some doctors that
never heard about the illness. Yeah, I think the awareness
is way too less. But also in the society I
don't think people know about his illness because it's a
rare disease. And even when you would try to explain
(10:54):
to the people that you have very severe master weakness
and things, they sometimes don't believe you because they saw
you walking, but now you're on the mobility aid, so
they question how it could be good yesterday but now
you can't walk or now you can swallow?
Speaker 1 (11:12):
Yeah, because it can be an invisible condition, right yeah,
from the outside, but like you said, in your body
it's like, you know, this is how you feel today,
but tomorrow it could be something different. And I'm also thinking,
do you find yourself just you know, informing people about
the condition.
Speaker 2 (11:29):
I try my best because I think it's very important
to spread awareness because many people suffer from it, but
nobody really understand how this illness works. And I try
to spread awareness and give information, especially when I'm on
a parking spot for disabled people and they ask why
are you standing on the spot and you have to
(11:52):
always explain yourself and it's very exhausting.
Speaker 1 (11:56):
Wow, And so it sounds like the awareness in Germany
definitely needs to be increased about my stheniogravis to let
more people know whether you're in Germany, the US, or
anywhere else, that gap between symptoms and answers can feel
like an invisible border. Lea's story reminds us that across
(12:19):
all countries, cultures, and healthcare systems, the fight to be seen, believed,
and diagnosed on time is a universal one. You mentioned,
Leah that there are days when your body just doesn't
let you do much. How do you care for yourself
physically and emotionally on those days?
Speaker 2 (12:41):
You have to rest a lot and give your permission
to rest. So when you try to fight against a body,
the symptoms for just worse and your recovery process will
take much longer.
Speaker 1 (12:55):
Yeah. So that's such a lesson to learn so young, right,
that some times you need to rest, and that you
think you're doing nothing, but your body's healing while that's happening,
and that's extremely important.
Speaker 2 (13:09):
Yes, Egil, when you want to do things you just can't,
otherwise your breathing could stop audio things.
Speaker 1 (13:16):
Yeah, and just accepting that, you know, which is trust
me hard at any age, but I can imagine for
someone so young just that much more frustrating.
Speaker 2 (13:25):
Yeah.
Speaker 1 (13:29):
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 conditions. Urgenics is
dedicated to serving the myasthenia gravis or MG community through
MG United. MG United was created by Ergenics to empower
(13:51):
the MG community by providing the latest information, resources, and
support to address the unique ways MG can affect their lives.
It also helps you connect with the community and see
real stories of real people living with MG wherever you
are in your mayasthenia gravist journey. MG united wants to
help make today a better day. For more information about
(14:11):
MG United, visit mg dash united dot com. And now
back to untold stories. Leah, you mentioned used to do
(14:32):
gymnastics and other sports when you were younger. What helped
you find new ways of joy and connection now after
you've been diagnosed.
Speaker 2 (14:43):
It took a very long way until I accept that
I couldn't do the sports anymore because it was my
passion and I thought I couldn't live without them, and
then I thought, Okay, I have to find something else
to make me happy. And then I started to crow
or to read and all these things you can do
(15:03):
without being too active when your muscles are weak, so
you try to find new ways to live and to
find joy in living even if you're sick and can
do the things. But yeah, I think it's very important
to always find things that keeps you happy in life.
Speaker 1 (15:23):
It sounds like you like really were trying to force
yourself to go back to those things because you love them.
Like you said, this was things that brought you joy
to do these sports and then to have that be
taken away I can imagine was very hard. But it
sounds like you have realized that there are things that
you can do when you're resting, and so you mentioned crochet, which,
(15:45):
let me tell you something, I have gotten many of
crochet kit and it's still I can't do it. And
so that's it's very impressive that you're able to do
that and to stick with it. But do you find
doing these kinds of things are out full?
Speaker 2 (16:01):
I think so because you find something, you will see
progress and find joy in it and you not just
lay in bed and be sad all the time because
you can do things.
Speaker 1 (16:12):
Yeah, and it sounds like you know you do have
good days right as well? And what do you enjoy
on those days when you feel good?
Speaker 2 (16:22):
I enjoyed that I can walk on my own or
meet friends and sometimes go shopping. Or also when the
sun is shining, I really like to go outside and
just sit there. Or I love animals, so my rabbits
are also outside and I love to go to them
and just pet them.
Speaker 1 (16:44):
Yeah, because I missed you, right, you haven't seen you
in a while.
Speaker 2 (16:48):
Yes, Also, like eating is something very special to me
because I couldn't eat for a very long time, and
now when it's sought outside and you can just eat
ice cream or it's very it makes me happy.
Speaker 1 (17:04):
What I love so much about this part of Leah's
story is that it doesn't matter what language you speak.
The little things don't need translation. The joy of eating
ice cream on a hot day, or just being able
to walk outside, that feeling is the same everywhere on
every part of the planet. You mentioned school, Leah being
(17:26):
challenging for you because of times when you just couldn't
be there and so you had to leave early and
give up some of that independence. Do you feel like
that is a part of your life that you've ever
grieved or recognized that you have had that loss.
Speaker 2 (17:44):
It was very challenging when the time was where I
was kicked out of school and was bullied from teachers
and students. But after that I grieved a long time.
I think so a year, But now I think I'm
very happy and grateful for what I reached, even with
(18:06):
my problems and my illness, and I never have to
see them again, so it's okay.
Speaker 1 (18:12):
See you later bye. Yeah. So I mean, but that
sounds like that was that was a real process that
you had to go through to really sort of I mean,
it sounds terrible too, that the teachers were and the
kids were bullying you. I'm so sorry, and it's again
it goes back to people just really not understanding, you know,
(18:34):
and not just taking a moment to actually ask you
and to learn about like what it is that you're
going through and to listen. But it sounds like it
took time for you to really kind of process that.
Speaker 2 (18:47):
Yeah, because it all started after the accident. Before that,
I had a lot of friends and I had never
problems with people. But since the moment of the accident,
everything changed and I had to change schools twice, and
every time it was okay at the beginning, and then
it kept getting worse and I get fullid and they
(19:09):
also questioned if I'm really sick. So that was a
big part of my journey that everyone always said it's
psychological or you're faking it.
Speaker 1 (19:18):
Thinking back to that twelve year old version of you,
what would you want that twelve year old self to
know about who you are today?
Speaker 2 (19:28):
I would show her how strong she is even in
the age of twelve, and how she kept fighting for
her life and kept fighting through school and got her
highest school graduation so for university and trades and everything
she never thought she would reach. And that she had
(19:49):
found her real friends that stayed by her side and
always try to be very good friends and help through
hard times. All these things.
Speaker 1 (20:00):
Yeah, and that she would turn out to be a
pretty cool person. Right, It's like, you know it's going
to be okay. Yeah, that's amazing. And so Leah, how
would you define strength now? And is it different from
what you thought about strength before you had MG.
Speaker 2 (20:17):
When I was younger, I thought strength is when you're
strong in your body, so you reach goals in sport.
But now I know that mentally strength is a bit
more important than the physical strength, because when you are
strong in your head, then you can achieve everything you
want to achieve. So I would say strength is to
(20:41):
be strong for yourself and to keep fighting and pushing.
Speaker 1 (20:45):
Yeah, and it's amazing because that mental strength, like you said,
is really what's going to keep you throughout your whole life.
Speaker 2 (20:52):
Yeah.
Speaker 1 (20:53):
What advice would you give to someone who is newly
diagnosed with a rare or misund stood condition like MG.
Speaker 2 (21:02):
The really trust yourself and believe in what your body's
telling you and never dubbed yourself. You know your body
better than everyone around you, and surround yourself with people
who truly care about you and make you feel safe.
And even if it's just one or two people, I
would always say to advocate for yourself in a healthcare system,
(21:25):
so ask questions, put for answers, and don't be afraid
to get a second or third opinion if something doesn't
feel right. And I would say remember that it's okay
to rest and set boundaries. So your health has to
come first always, and you can still live a meaningful
and fulfilling life, but you have to give yourself the kindness, patience,
(21:48):
and trust in yourself that you deserve.
Speaker 1 (21:50):
It's amazing, Leah, great advice for anybody, for sure, but
I think those sound like really hard earned lessons from you,
you know, especially the piece around advocating and trusting what's
happening in your body. And it sounds like your mom
also too, is a real help and influence to make
you kind of get to where you are now. And
so you're kind of like passing that along now right
(22:12):
to others who are newly diagnosed. And so after learning
so much about how to live with MG as you
have for now, you know, such a long period of
your young life, what do you wish you knew when
you were first diagnosed.
Speaker 2 (22:27):
I wish I just got more information. I didn't really
know that I have to set limits for myself, or
that it's okay to ask for help and to use
the mobility aids and other stuff you need to live.
I had to research everything in the internet and to
teach myself about the illness. And yeah, then I figured
(22:50):
out how serious this illness is.
Speaker 1 (22:52):
And you got through it, and now you're on the
side of it where you can use what it is
that you have learned pass that along to others. Well, yeah, Leah,
you said it can get better. If you think it
can get better, can you tell us more about that
positive attitude?
Speaker 2 (23:09):
I think it's important to have a positive mindset because
when you're always said and always think, I'm sick and
it can get better, and just laying in bed all
the time, you lose muscles, and you lose hope and
everything that keeps you alive and pushes you to fight
for your health and to reach goals you can reach
(23:31):
even with the illness. So I think it's very important
to be happy even if you're sick, and to find
things that makes you happy and when you feel better,
to do the things you can do and not just
laying in bed and say I'm sick, I can't do something.
Speaker 1 (23:48):
Yeah, And that's what you're saying, is like to have
that attitude is something that affects your physical health as well.
And so it's not just like, oh, just have a
positive mind, but it really is a way to help
yourself heal because it's.
Speaker 2 (24:05):
Also when you feel bad, your mindset can get better,
and then your physical health gets worse. So you need
to think positive to feel more positive in your body
and to achieve goals who can reach.
Speaker 1 (24:21):
And your proof of that right because by having that
positive attitude, you have been able to meet some of
your goals and to continue to support people. And I
think that you mentioned again about you know, just talking,
we can always keep talking about your mom. You said,
you know your mom has been a rock for you.
Can you talk about how she's helped and supported you
along the way.
Speaker 2 (24:42):
I think the biggest support from her was that she
always believed me and always stayed on my side. She
was the strongest and most constant support of myself in
this journey, and she fought for me and I couldn't
fight for myself, and she did everything to keep me
alive and to random test, I need.
Speaker 1 (25:02):
Yeah, shout out for mom. I mean, that's amazing, right,
and again especially when you know, like you said, she
was even being accused of not telling the truth about
what's happening. So this is amazing to be able to
have mom, to be able to continue to support you. Yeah, Leah,
thank you so much for your time and energy and
your spirit today. It has been amazing talking to you.
(25:23):
Thank you so much.
Speaker 2 (25:24):
Thank you, it was very amazing. I was ensited a lot.
Speaker 1 (25:32):
Lea's story is such a strong reminder that no matter
where you are in the world, it's resilience, honesty, and
the people around you that help you through the fight
to be seen. It's universal, and so is the strength
that it takes to keep going. Thanks for listening to
this episode of Untold Stories, and this marks the end
(25:53):
of season four. We'll be back soon with more Untold Stories.
But in the meantime, if Lea's story resonated with you,
share it with someone in your MG circle, and if
you have a moment, please rate and review the show
on your favorite podcast app. Untold Stories Life with the
(26:13):
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
in partnership with Argenix, and hosted by me Martine Hackett.
Our executive producer is Yvonne Shehan. Our producer is Leah Sutherland.
This episode was written and produced by Diana Davis. Post
production for this season is by Tom Sullivan and Paul
Viteleans of Audiography.
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