September 3, 2025 • 29 mins
Leah is a Mexican American who experienced symptoms from slurring her words and choking on food with multiple doctors struggling to see the full picture. In this episode, hear how an MG crisis helped Leah uncover a diagnosis and how she turned that experience into action, building a space for others who may not feel seen.
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Episode Transcript
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Speaker 1 (00:09):
Welcome back to Untold Stories Life with a severe autoimmune condition.
I'm Martine Hackett, and I'm really glad you're here. In
this episode, we're exploring how culture, language, and personal history
can all shape the way we experience life with a
severe illness, and even how we see ourselves today. Our guest,
Leah Gaetan Diaz, a Mexican American woman and native Spanish speaker,
(00:31):
shares what it's like to navigate confusing symptoms, long delays
in her MG diagnosis, and the emotions that come with
not always feeling seen or understood. But as you're about
to hear through it all, Leah has found her voice
and is now using it to bring connection and support
to others. Her story is about resilience, growth, and learning
(00:52):
to advocate for yourself in a system that isn't always
easy to understand. Let's meet her now.
Speaker 2 (00:58):
Hi, Leiah, good morning. Hi.
Speaker 3 (01:01):
Yeah.
Speaker 1 (01:01):
Let's start off seeing if you could take us back
to the beginning. What were the first symptoms you experienced?
Speaker 3 (01:09):
The actual first symptom was my upper lip. So when
you're second on a straw, I couldn't do that. I
couldn't move my upper lip for some reason. I kind
of let it be, didn't make a big deal of it.
I'm like, okay, maybe I'm just stressing from work. I
was the store manager at that time for a men's
clothing store, and I worked in.
Speaker 2 (01:29):
La Jolla, so it was, yeah, which is fancy.
Speaker 3 (01:34):
It was fancy, so it's to be very firsized with
the customers and with the gentlemen, and yes, sir, you.
Speaker 1 (01:41):
Had loyal customers and people who knew you.
Speaker 2 (01:43):
Oh definitely.
Speaker 3 (01:44):
I had trouble tuning and swallowing, and then I was slurring,
so I couldn't talk to my customers anymore. It was
my tongue was all over the place. But it was
all these symptoms will come and go. And then after
that I started having problems with my double vision. So
I would wake up fine, but then towards the afternoon,
(02:06):
especially evening, I could not see. So driving home in
the dark, I would have to close one eye.
Speaker 2 (02:13):
Because I was seeing two roads.
Speaker 3 (02:15):
On the freeway and I'm like, okay, this is not right.
And it was strange because in the morning my eyes
were fine, but then when I got off of work,
my eyes were just all over the place. And I
did go see an autometrist that was around the corner.
He was actually one of my customers, and he's like,
you know what, there's something wrong with it. I'm going
to give you prism glasses, but you need to go
(02:35):
to a specialist because this is something that I haven't
seen before. During all this time, I was seeing different
doctors to get debt testing. Okay, so I went to
ear throat doctor. He tested and see if there was
any obstruction.
Speaker 2 (02:51):
Nothing.
Speaker 3 (02:52):
Finally, I was going to see a neurologist and first
he thought it was I had a mess because of
all the symptoms, but then he did testing and all
came out negative. So it was taking about a year
for me to actually get diagnosed. And because I was
having problems chewing and swallowing, I was loing seeing so much.
Speaker 2 (03:13):
Weight very fast.
Speaker 3 (03:15):
I was literally starting myself to death. So I went
from a size I think ten to its size zero
in about a month. Yeah, and everybody's like, oh, you
look great, and I'm like, really, it's like keep starting right.
Speaker 1 (03:36):
Rare conditions are difficult to diagnose, and while it's not
usually intentional or malicious, those missed connections can have a
real emotional impact on patients seeking answers.
Speaker 2 (03:48):
Wow.
Speaker 1 (03:49):
So how did it feel to be told over and
over again that no one had any answers for you?
Speaker 3 (03:55):
Very frustrating. Growing up, I was very complicit. I was
obeyed and never speak back. Respect your elders, respect people
that are above an authority.
Speaker 2 (04:08):
My husband's like, you don't even j walk right. Total
rule follower.
Speaker 3 (04:14):
So then it came to the point that I went
to my doctor. I'm like, you need to give me something.
I can't drive, I can't work, like something's wrong with me.
And I'm like, what do what you gotta do? I
need to do something. And for me to be like that,
I was so desperate. I just need to know what's
wrong with me, because in my family I would get oh,
(04:35):
it's in your head, you're just stressed from work. So
finally when I did get the test back, I was like,
oh great, Yeah I got a diagnosis. Now what's next.
Speaker 1 (04:51):
And Lea, you talked a little bit about your family
before and how they sort of responded. How did your
family respond to your diagnosis and do you think your
culture impacted their response?
Speaker 2 (05:01):
Oh? Big time.
Speaker 3 (05:02):
At that time, there wasn't a lot of articles in Spanish,
so I was able to find something, but in the article,
I didn't say how severe this disease is and where
like I can end up, which I ended up three
times with crisis. So I printed it out so my
mom could read it. And then she's like, oh, okay,
(05:24):
well you're gonna be fine. Oh it's all in your head,
you know, don't be lazy.
Speaker 1 (05:32):
For many of us, especially in certain cultures, we're raised
to respect authority and follow the rules, whether it's with family, teachers,
or doctors. It can make speaking up for yourself feel uncomfortable,
even when it really matters. Were they ever able to
fully understand what you were going through, especially considering like
(05:53):
you said that the language might not have been exactly
the same.
Speaker 2 (05:58):
No.
Speaker 3 (05:59):
No, And that's where I see a lot of people
that are in our culture, unless they see a disease
that they can see, it's like they it's for them.
Speaker 2 (06:16):
They don't get it.
Speaker 3 (06:17):
And I see that with a lot I saw that
with a lot of patients, especially a lot of women
around my age. I see that when young girl she
I think she's from New York. She was just crying, like,
my family doesn't get it. What am I going to
do to it for them to understand it? And I go.
The best thing for you to do is give them
(06:39):
all the resources that are out there now in English
and Spanish, and I send her links. I emailed her
different links, and that's it. That's all you can do,
because if you continue trying to make them understand, you're
just going to make yourself sick. I think back when
(07:02):
I was growing up. I think this is something I
always had because when I would eat, I would take forever,
to the point that I would fall asleep on the
kitchen table. So things like that that I kind of
go back and wow, why, Or I couldn't get.
Speaker 2 (07:19):
Up to go to school.
Speaker 3 (07:20):
I would be feeling so exhausted, little things like that
I couldn't run. So I started thinking about But my
family wasn't really supportive because it looks sick, and because
I lost all that weight, you know, they're like, oh,
you look fine.
Speaker 1 (07:39):
What Leah is describing is something that many people with
MG and other autoimmune conditions face. When you don't quote
unquote look sick, others can't fully understand what you're going through,
and sometimes even the people closest to you need help
seeing the full picture.
Speaker 3 (07:57):
I decided to go to Mexico to get a second opinion,
and my aunts and my cousins were like, what's wrong
with you? Are you forgetting how to speak Spanish? Because
I was storing so much, so they couldn't really understand
me and my frustration to speak. It was just like, well,
it was just I couldn't talk. When I finally went
(08:18):
to a specialist in Mexico, my cousin took me and
I didn't even know how weak I was until the
doctor started doing these tests for strength, and then he
did test for my legs and my hips and he goes,
have you noticed how weak your legs are? And I'm
like no, and he goes, well, be careful because your
(08:42):
legs are weak. So climbing stairs and stuff, just hold
the rail because it can be a problem. So then
my cousin started asking the doctor is there a cure?
Is my cousin going to be better? And the doctor's
like no. And at that time he's like, we don't.
I don't have a lot of the medications she's taking
(09:03):
now in the US, we don't have them here. So
it's a good thing that she has the treatments that
they're doing there. So then my cousin looked at me,
and he kind of started crying.
Speaker 1 (09:15):
Oh gosh.
Speaker 3 (09:16):
And when he went back and told my aunt, and
this is my aunt, my mom's younger sister. She called
my mom and gave her an ear full like do
you know what's wrong with your daughter? Like she's not
well and you need to be more understanding and all
this of course in Spanish, you know, And it was
very emotional for me because I saw that I had
(09:39):
their support and I'm not crazy, it's not in my head.
Speaker 1 (09:45):
And it sounds like this was, you know, a moment
where you realize that you couldn't just power through this
right correct.
Speaker 3 (09:52):
And the thing is, because I've had child trauma, I
thought I was going to be able to do the
same thing as what I with my child trauma, just
push it aside and be a workaholic and.
Speaker 2 (10:04):
Move on with my life and even move on nothing. Yes,
go go go.
Speaker 3 (10:11):
But when I had to stop and I couldn't even work, like,
everything came back. So I had to work on me.
Not only would my child trauma with this too, so
I to adjust my life to a better life emotionally, physically, mentally, spiritually.
(10:32):
So I had to see it and make adjustments and
I'm okay with that. And I think working in retail,
like I would tell my employees, I would have them
wherever we're band around that at risk, and I would
be like, retail work is like this rubber band. You
have to be flexible, yes, you know, Okay, So that's
my life. I have to be flexible and understand it
(10:55):
and work with it and adjust my life to it.
Each day that goes by is just a new beginning
for me, a new start, and I'm happy with that.
And I'm very very content that, you know what, this
was a super lining getting having this disease because now
I have a voice. Now I can speak up. Now
(11:17):
I can say no, there's something wrong with me. And
if you don't want to help me out next, I'm
not disrespectful. And that's what I tell people to advocate
for themselves, because it's okay to speak up, you know,
and all aspects of your life.
Speaker 1 (11:32):
Leah, you said that MG forced you to slow down.
How did you learn to accept that shift?
Speaker 2 (11:39):
Hmm? It took a while. It took me.
Speaker 3 (11:45):
Living one day at a time and understanding that me
pushing myself was going to end up in the er.
And I kept going to that extreme. I pushed my
I'm going to end up in the r even though
it's not usually the er is just the excavation and
(12:05):
just having to like rest for the next two days.
I'm like, I don't want to live that way, So
I have to adjust my life. I have to not
worry about things that I can't control. Not worry about
if the dishes don't get washed, not worry if I
don't have to do laundry this week. Things that it's like,
(12:27):
no stress, no stress it and it takes it one
day at a time, and being grateful for what I have,
the blessings that I have. Gratitude is the biggest thing.
Is like I have a roof from my head, I
have a great husband, I had food on the table,
(12:47):
I have my two furry dogs, you know, and live
life be happy for what I have. Also too, it's
like getting older, your body changes and you have to adjust.
The difference is now it happened when I was younger
because of a disease. So I just have to be
(13:08):
content and be happy of what I have.
Speaker 1 (13:12):
You mentioned your husband, Octavio, has been a huge champion
for you. Could you tell us more about that and
how has he helped shape your journey.
Speaker 2 (13:21):
Oh wow.
Speaker 3 (13:23):
My husband's been very outspoken, and it's been in his
family that they've always been very outspoken, very different from mine.
So from I started having a voice for myself, his
support of not holding back has helped me. His encouragement
(13:46):
on the sidelines, him going over and beyond for me
being there as he's always been, no matter what, He
asking the questions when we go to the doctors. I
sometimes I forget my fog brain is like I can't remember,
or he sees something that happens with me that I
don't even notice, and he'll ask the doctors or he'll
tell the doctors. He never says no to me. We
(14:09):
need to go somewhere, we need to do something. Okay,
I'm there, and he's helped me when the times used
to get rough.
Speaker 2 (14:15):
He would help me take a shower.
Speaker 3 (14:18):
He would make me dinner or breakfast or whatever meal
needed to eat because if I couldn't cook, he would
do everything that I couldn't do, laundry, clean the house,
do all this stuff that I am just so blessed
that before because we lived with my parents for a while,
(14:40):
my aunt, she came from Mexico, to visit and she
saw everything that he would do for me physically, laundry, cooking,
dinner and all that kind of stuff. And my aunt
was like, oh my god, your mom should be grateful.
Then you're being taken care of. Yeah, he goes, There's
(15:01):
not a lot of men out there that would do
this for their wives.
Speaker 2 (15:06):
And how we got married. We got married when I
was at my worst.
Speaker 3 (15:11):
We've been through so many hard times together that we
sit back and see what we have and we are
just so grateful. We're like, wow, look if we own
a house. I never thought I was gonna be able
to own a house being on permitted disability, and never
thought I was going to have my own big kitchen
(15:32):
to be able to cook. And my plants in my backyard.
Speaker 2 (15:36):
Wow. And he does all that stuff.
Speaker 3 (15:38):
He works in the yard to make our yard look beautiful,
cutting the grass, the.
Speaker 2 (15:42):
Little things that we kind of don't notice.
Speaker 3 (15:45):
I noticed those things, and for me, they're big things
and I'm just so blessed to have them in my life.
Speaker 1 (15:52):
It's beautiful. Thank you so much. 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
(16:12):
mayasthenia gravis or MG community through MG United. MG United
was created by Ergenics to empower 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
(16:33):
myasthenia gravis journey. MG united wants to help make today
a better day. For more information about MG United, visit
mgdashunited dot com. And now back to untold stories. Tell
(16:59):
me about the support group. At what point did you
decide to start a support group from scratch?
Speaker 3 (17:06):
Well, I was living in LA and my husband and
I were like, there's no support group in LA like
USC area. So I talked to my doctor and he
let me use his conference room at that time to
do the Southern California Support group.
Speaker 2 (17:25):
Okay, So I started there.
Speaker 3 (17:27):
I would do it I think once a month, I
can't remember, but anyways, we would do it as conference room,
and then little by little I started doing online Spanish
support group. I got a lot of pushback because I
wanted other support group leaders, especially in southern California.
Speaker 2 (17:46):
Hello, you know, like what people speak Spanish? Percent of
people speak Spanish. So I continue doing it.
Speaker 3 (17:53):
And you know what, even if one patient showed up,
I helped that one patient. Sometimes I wouldn't have people
even show up, and that's okay. I would wait there
for fifteen, maybe sometimes twenty minutes and then nobody shows up. Fine,
but I'm here. Then when we decided to move here
to Texas, I told my husband, you know what, I'm
going to concentrate with the Spanish speaking group. And little
(18:18):
by little I started getting two three, and all of
a sudden it started being international, from Spain, Argentina, Puerto Rico, Columbia, Ecuador,
even Chile. I was like, okay, I'll take it, you know.
And it was really nice because we all were Spanish
(18:41):
speaking community, but from very different cultures, very different countries,
and how they treat their patients, the treatments that they have, everything.
So it was kind of like educating everybody and also
to educating the people here in the US for them
(19:02):
to understand and the blessings that we have. I have
a lady and her daughter from Canada and even though
there's medications that they can provide there that are free.
If it's too expensive, your doctor has to write letters,
you have to go through all these loopholes to maybe
(19:26):
even get it. And people from Spain and educating them
how we do things here in the US, because their
questions were like, well, how many empty patients are there?
And I go, it's aroundabout we don't exactly know. And
he goes, well, why not other people that go to
the doctors don't the doctors put it in a file.
(19:46):
I'm like, no, it's confidential unless we have a release
form saying yes, put my information on the database showing
how many people have the disease. So it's kind of
educating people and it's really nice because people know what
everybody's going through and people that don't feel that they're alone.
Speaker 1 (20:09):
Leah's story is a powerful reminder that having a community
that understands you emotionally and culturally can be just as
critical as any treatment plan for those living with MG,
especially the ones navigating language and cultural barriers. That kind
of connection isn't just comforting, it can be life saving.
Speaker 3 (20:31):
This last meeting that I had in May, I had
a lady from Argentina and a lady that lived in Chicago,
and they were very similar in age. There were professionals,
once a lawyer, the other ones a teacher, so they
both were similar in the struggles of their disease, and
they were able to talk and understand each other. And
(20:53):
the lady from Argentina was just newly diagnosed, so she
was so grateful to be in on the call. My
meetings are every other month. I don't have a time limit,
and this is what's nice. We are here until they
feel comfortable enough to log off and say I feel good.
(21:14):
There's light at the end of the tunnel.
Speaker 2 (21:17):
You're going to be okay.
Speaker 3 (21:19):
It's not an easy journey. It's not going to happen overnight.
And number one I notice with people with my senior
girl is patience is number one key, patience with your
own body. So people come and now I have I
guess almost one hundred people that come and go that
(21:40):
have come into my group.
Speaker 1 (21:42):
How long will some of the meetings last if they're
open ended?
Speaker 2 (21:44):
About three hours?
Speaker 1 (21:46):
Wow, Lea. How do you think healthcare professionals can improve
their understanding of the cultural differences among patients Like you
talked about.
Speaker 3 (21:55):
Number One key is patients a lot of doctors that
only speak English. Spanish is my first language. Yes I
have an accent, Yes I speak English, but you need
to be more plain English so I could understand and
all this medical terminology and also to the understanding. And
(22:17):
then I'm asked, I'm like, well, what else can we
do or what are the side effects?
Speaker 2 (22:23):
Or how am I going to feel?
Speaker 3 (22:24):
Or how it's going to be for them to take
that time and have a sit down and talk and
talk in the language that I can understand, because just
because it's English doesn't mean it's going to be easy
for me to understand. And I don't like saying it,
but dumb it down.
Speaker 1 (22:40):
I mean, if you think about it too, I mean,
obviously people are going through a lot as they're hearing
this information, so you're also going through your emotions. I
get it, that's your job, but you also have to
hear it from understand. My perspective is that this is
a lot that I'm taking in.
Speaker 3 (22:54):
And I'm blessed to have the doctors that I have
Now the company that work for that's part of their
policy is sitting there sort of cultural sensitivity. Culture sensitivity
the patients sit there and talk to you and just
go and do depth any questions that we had. They
won't leave the room until all my questions are answered.
Speaker 1 (23:15):
It sounds like you have found some providers that really
understand that and are taking the time that you need.
Speaker 3 (23:22):
Definitely, and like I tell a lot of new patients,
is you have to have a team, a team of doctors,
starting with your good primary, and then that primary would
lead you to everybody else that you need, because this
disease is not just genrologists. You need a pulmonary for
you're breathing. You need a sleep doctor because most likely
(23:43):
you have a sleep apnea, and good doctors and if
they're not answering those questions, it's okay to go to
another doctor. There's nothing wrong with that. You're not being rude,
you're not being disressed. And this is something that the
rule follower Leah had to learn. I'm sure.
Speaker 1 (24:01):
Oh yes, so, Leah, how has your definition of strength
changed since your diagnosis?
Speaker 2 (24:07):
Oh wow?
Speaker 3 (24:10):
My definition is not before strength it will be like
how many boxes I can carry out work. Now, my
strength is able to have the strength in my mind
that I'm not weak. I am able to do things
(24:31):
that I can do more of I have the strength
in my heart that I can be able to help
out people because of my experience of everything that I've
been through in my life, that I can show that
light and that hope. I tell people it's a speranza.
(24:52):
It's not just a physical thing anymore through spirit. Yeah,
most definitely, Lea.
Speaker 1 (24:59):
What's the most important thing you think people need to
know about cultural differences, especially when dealing with a rare
autoimmune condition.
Speaker 3 (25:07):
People need to understand that even though we are all
different period, human nature is very different. And when we
have these big events in our life, especially when it
has to do with your health, we all go and
lean towards our native language, and we lean to our
(25:31):
native language because that's how we feel safe, that's what
we feel heard, that's how we feel supported. And people
need to have that understanding and a little bit of
compassion for people that we don't look sick, but there's
something wrong and understand that it's we're still human. It
(25:57):
can happen to you, it can happen to them. Remember,
we never wish this on anybody, but it's sad because
how the world is unless it happens under your own house, Yeah,
people are not understanding that's right, but.
Speaker 1 (26:16):
To recognize, like you said, that we're all human, So
these are things that can happen to any one of us.
And what's it like now when someone new joins your
group and tells you I finally feel understood.
Speaker 3 (26:29):
I feel so grateful for them, for us, for my group,
for everybody that shows up, for that one person. I
feel joy inside for myself because I'm taking that step
forward to be there for them that they're not feeling
like I felt, not knowing where to turn or who
(26:49):
to talk to that understands this. I used to have
to drive about three hours to get to a support group,
you know, from San Diego to La because there wasn't
any around and the Zoom wasn't around at that time.
So having the technology, this is a good thing about technology,
(27:10):
be able to communicate to that person. And it feels
really nice to knowing that they're not alone. And I'm like,
I'm not alone either.
Speaker 1 (27:20):
It sounds like they're helping you too.
Speaker 3 (27:22):
Oh yeah, most definitely, because I don't feel alone. It's
different from the English speaking support groups and the Spanish
speaking support groups. It's a totally different vibe. Yeah, I'm
here for them and for me. That's not stress, and
that's what life is. Don't stress. Take you one day
(27:43):
at a time, live your life to your fullest and
what you can, and love it. You know, life is
very precious.
Speaker 1 (27:53):
Well, Leah, You're precious, And thank you so much for
this interview today. I really feel like I learned a
lot from you, and I'm really inspired by you because
I think you really are embodying exactly the things that
people who don't have an autoimmune disease really should be
living by. And thank you so much.
Speaker 3 (28:14):
Oh, it was my pleasure. Thank you so much for
having me, which has got ask us for this stat
I came for im wee plus it.
Speaker 1 (28:25):
A big thank you to Leah for sharing her story
with us today. Her journey shows how deeply culture, language,
and personal experience can shape the way we navigate our
health challenges. It's also a reminder that no matter what
language we speak or where we grow up, there's still
so much power in how we use our voice to
(28:46):
help ourselves and others. Whether you're just starting to ask
questions on your health journey or you've been down this
road before, I hope Leah's story encourages you to trust
your instincts and to seek out the care you need
and deserve. Thanks for listening. Untold Stories Life with the
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
(29:10):
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
Viedelens of Audiography
Welcome back to Untold Stories Life with a severe autoimmune condition.
I'm Martine Hackett, and I'm really glad you're here. In
this episode, we're exploring how culture, language, and personal history
can all shape the way we experience life with a
severe illness, and even how we see ourselves today. Our guest,
Leah Gaetan Diaz, a Mexican American woman and native Spanish speaker,
(00:31):
shares what it's like to navigate confusing symptoms, long delays
in her MG diagnosis, and the emotions that come with
not always feeling seen or understood. But as you're about
to hear through it all, Leah has found her voice
and is now using it to bring connection and support
to others. Her story is about resilience, growth, and learning
(00:52):
to advocate for yourself in a system that isn't always
easy to understand. Let's meet her now.
Speaker 2 (00:58):
Hi, Leiah, good morning. Hi.
Speaker 3 (01:01):
Yeah.
Speaker 1 (01:01):
Let's start off seeing if you could take us back
to the beginning. What were the first symptoms you experienced?
Speaker 3 (01:09):
The actual first symptom was my upper lip. So when
you're second on a straw, I couldn't do that. I
couldn't move my upper lip for some reason. I kind
of let it be, didn't make a big deal of it.
I'm like, okay, maybe I'm just stressing from work. I
was the store manager at that time for a men's
clothing store, and I worked in.
Speaker 2 (01:29):
La Jolla, so it was, yeah, which is fancy.
Speaker 3 (01:34):
It was fancy, so it's to be very firsized with
the customers and with the gentlemen, and yes, sir, you.
Speaker 1 (01:41):
Had loyal customers and people who knew you.
Speaker 2 (01:43):
Oh definitely.
Speaker 3 (01:44):
I had trouble tuning and swallowing, and then I was slurring,
so I couldn't talk to my customers anymore. It was
my tongue was all over the place. But it was
all these symptoms will come and go. And then after
that I started having problems with my double vision. So
I would wake up fine, but then towards the afternoon,
(02:06):
especially evening, I could not see. So driving home in
the dark, I would have to close one eye.
Speaker 2 (02:13):
Because I was seeing two roads.
Speaker 3 (02:15):
On the freeway and I'm like, okay, this is not right.
And it was strange because in the morning my eyes
were fine, but then when I got off of work,
my eyes were just all over the place. And I
did go see an autometrist that was around the corner.
He was actually one of my customers, and he's like,
you know what, there's something wrong with it. I'm going
to give you prism glasses, but you need to go
(02:35):
to a specialist because this is something that I haven't
seen before. During all this time, I was seeing different
doctors to get debt testing. Okay, so I went to
ear throat doctor. He tested and see if there was
any obstruction.
Speaker 2 (02:51):
Nothing.
Speaker 3 (02:52):
Finally, I was going to see a neurologist and first
he thought it was I had a mess because of
all the symptoms, but then he did testing and all
came out negative. So it was taking about a year
for me to actually get diagnosed. And because I was
having problems chewing and swallowing, I was loing seeing so much.
Speaker 2 (03:13):
Weight very fast.
Speaker 3 (03:15):
I was literally starting myself to death. So I went
from a size I think ten to its size zero
in about a month. Yeah, and everybody's like, oh, you
look great, and I'm like, really, it's like keep starting right.
Speaker 1 (03:36):
Rare conditions are difficult to diagnose, and while it's not
usually intentional or malicious, those missed connections can have a
real emotional impact on patients seeking answers.
Speaker 2 (03:48):
Wow.
Speaker 1 (03:49):
So how did it feel to be told over and
over again that no one had any answers for you?
Speaker 3 (03:55):
Very frustrating. Growing up, I was very complicit. I was
obeyed and never speak back. Respect your elders, respect people
that are above an authority.
Speaker 2 (04:08):
My husband's like, you don't even j walk right. Total
rule follower.
Speaker 3 (04:14):
So then it came to the point that I went
to my doctor. I'm like, you need to give me something.
I can't drive, I can't work, like something's wrong with me.
And I'm like, what do what you gotta do? I
need to do something. And for me to be like that,
I was so desperate. I just need to know what's
wrong with me, because in my family I would get oh,
(04:35):
it's in your head, you're just stressed from work. So
finally when I did get the test back, I was like,
oh great, Yeah I got a diagnosis. Now what's next.
Speaker 1 (04:51):
And Lea, you talked a little bit about your family
before and how they sort of responded. How did your
family respond to your diagnosis and do you think your
culture impacted their response?
Speaker 2 (05:01):
Oh? Big time.
Speaker 3 (05:02):
At that time, there wasn't a lot of articles in Spanish,
so I was able to find something, but in the article,
I didn't say how severe this disease is and where
like I can end up, which I ended up three
times with crisis. So I printed it out so my
mom could read it. And then she's like, oh, okay,
(05:24):
well you're gonna be fine. Oh it's all in your head,
you know, don't be lazy.
Speaker 1 (05:32):
For many of us, especially in certain cultures, we're raised
to respect authority and follow the rules, whether it's with family, teachers,
or doctors. It can make speaking up for yourself feel uncomfortable,
even when it really matters. Were they ever able to
fully understand what you were going through, especially considering like
(05:53):
you said that the language might not have been exactly
the same.
Speaker 2 (05:58):
No.
Speaker 3 (05:59):
No, And that's where I see a lot of people
that are in our culture, unless they see a disease
that they can see, it's like they it's for them.
Speaker 2 (06:16):
They don't get it.
Speaker 3 (06:17):
And I see that with a lot I saw that
with a lot of patients, especially a lot of women
around my age. I see that when young girl she
I think she's from New York. She was just crying, like,
my family doesn't get it. What am I going to
do to it for them to understand it? And I go.
The best thing for you to do is give them
(06:39):
all the resources that are out there now in English
and Spanish, and I send her links. I emailed her
different links, and that's it. That's all you can do,
because if you continue trying to make them understand, you're
just going to make yourself sick. I think back when
(07:02):
I was growing up. I think this is something I
always had because when I would eat, I would take forever,
to the point that I would fall asleep on the
kitchen table. So things like that that I kind of
go back and wow, why, Or I couldn't get.
Speaker 2 (07:19):
Up to go to school.
Speaker 3 (07:20):
I would be feeling so exhausted, little things like that
I couldn't run. So I started thinking about But my
family wasn't really supportive because it looks sick, and because
I lost all that weight, you know, they're like, oh,
you look fine.
Speaker 1 (07:39):
What Leah is describing is something that many people with
MG and other autoimmune conditions face. When you don't quote
unquote look sick, others can't fully understand what you're going through,
and sometimes even the people closest to you need help
seeing the full picture.
Speaker 3 (07:57):
I decided to go to Mexico to get a second opinion,
and my aunts and my cousins were like, what's wrong
with you? Are you forgetting how to speak Spanish? Because
I was storing so much, so they couldn't really understand
me and my frustration to speak. It was just like, well,
it was just I couldn't talk. When I finally went
(08:18):
to a specialist in Mexico, my cousin took me and
I didn't even know how weak I was until the
doctor started doing these tests for strength, and then he
did test for my legs and my hips and he goes,
have you noticed how weak your legs are? And I'm
like no, and he goes, well, be careful because your
(08:42):
legs are weak. So climbing stairs and stuff, just hold
the rail because it can be a problem. So then
my cousin started asking the doctor is there a cure?
Is my cousin going to be better? And the doctor's
like no. And at that time he's like, we don't.
I don't have a lot of the medications she's taking
(09:03):
now in the US, we don't have them here. So
it's a good thing that she has the treatments that
they're doing there. So then my cousin looked at me,
and he kind of started crying.
Speaker 1 (09:15):
Oh gosh.
Speaker 3 (09:16):
And when he went back and told my aunt, and
this is my aunt, my mom's younger sister. She called
my mom and gave her an ear full like do
you know what's wrong with your daughter? Like she's not
well and you need to be more understanding and all
this of course in Spanish, you know, And it was
very emotional for me because I saw that I had
(09:39):
their support and I'm not crazy, it's not in my head.
Speaker 1 (09:45):
And it sounds like this was, you know, a moment
where you realize that you couldn't just power through this
right correct.
Speaker 3 (09:52):
And the thing is, because I've had child trauma, I
thought I was going to be able to do the
same thing as what I with my child trauma, just
push it aside and be a workaholic and.
Speaker 2 (10:04):
Move on with my life and even move on nothing. Yes,
go go go.
Speaker 3 (10:11):
But when I had to stop and I couldn't even work, like,
everything came back. So I had to work on me.
Not only would my child trauma with this too, so
I to adjust my life to a better life emotionally, physically, mentally, spiritually.
(10:32):
So I had to see it and make adjustments and
I'm okay with that. And I think working in retail,
like I would tell my employees, I would have them
wherever we're band around that at risk, and I would
be like, retail work is like this rubber band. You
have to be flexible, yes, you know, Okay, So that's
my life. I have to be flexible and understand it
(10:55):
and work with it and adjust my life to it.
Each day that goes by is just a new beginning
for me, a new start, and I'm happy with that.
And I'm very very content that, you know what, this
was a super lining getting having this disease because now
I have a voice. Now I can speak up. Now
(11:17):
I can say no, there's something wrong with me. And
if you don't want to help me out next, I'm
not disrespectful. And that's what I tell people to advocate
for themselves, because it's okay to speak up, you know,
and all aspects of your life.
Speaker 1 (11:32):
Leah, you said that MG forced you to slow down.
How did you learn to accept that shift?
Speaker 2 (11:39):
Hmm? It took a while. It took me.
Speaker 3 (11:45):
Living one day at a time and understanding that me
pushing myself was going to end up in the er.
And I kept going to that extreme. I pushed my
I'm going to end up in the r even though
it's not usually the er is just the excavation and
(12:05):
just having to like rest for the next two days.
I'm like, I don't want to live that way, So
I have to adjust my life. I have to not
worry about things that I can't control. Not worry about
if the dishes don't get washed, not worry if I
don't have to do laundry this week. Things that it's like,
(12:27):
no stress, no stress it and it takes it one
day at a time, and being grateful for what I have,
the blessings that I have. Gratitude is the biggest thing.
Is like I have a roof from my head, I
have a great husband, I had food on the table,
(12:47):
I have my two furry dogs, you know, and live
life be happy for what I have. Also too, it's
like getting older, your body changes and you have to adjust.
The difference is now it happened when I was younger
because of a disease. So I just have to be
(13:08):
content and be happy of what I have.
Speaker 1 (13:12):
You mentioned your husband, Octavio, has been a huge champion
for you. Could you tell us more about that and
how has he helped shape your journey.
Speaker 2 (13:21):
Oh wow.
Speaker 3 (13:23):
My husband's been very outspoken, and it's been in his
family that they've always been very outspoken, very different from mine.
So from I started having a voice for myself, his
support of not holding back has helped me. His encouragement
(13:46):
on the sidelines, him going over and beyond for me
being there as he's always been, no matter what, He
asking the questions when we go to the doctors. I
sometimes I forget my fog brain is like I can't remember,
or he sees something that happens with me that I
don't even notice, and he'll ask the doctors or he'll
tell the doctors. He never says no to me. We
(14:09):
need to go somewhere, we need to do something. Okay,
I'm there, and he's helped me when the times used
to get rough.
Speaker 2 (14:15):
He would help me take a shower.
Speaker 3 (14:18):
He would make me dinner or breakfast or whatever meal
needed to eat because if I couldn't cook, he would
do everything that I couldn't do, laundry, clean the house,
do all this stuff that I am just so blessed
that before because we lived with my parents for a while,
(14:40):
my aunt, she came from Mexico, to visit and she
saw everything that he would do for me physically, laundry, cooking,
dinner and all that kind of stuff. And my aunt
was like, oh my god, your mom should be grateful.
Then you're being taken care of. Yeah, he goes, There's
(15:01):
not a lot of men out there that would do
this for their wives.
Speaker 2 (15:06):
And how we got married. We got married when I
was at my worst.
Speaker 3 (15:11):
We've been through so many hard times together that we
sit back and see what we have and we are
just so grateful. We're like, wow, look if we own
a house. I never thought I was gonna be able
to own a house being on permitted disability, and never
thought I was going to have my own big kitchen
(15:32):
to be able to cook. And my plants in my backyard.
Speaker 2 (15:36):
Wow. And he does all that stuff.
Speaker 3 (15:38):
He works in the yard to make our yard look beautiful,
cutting the grass, the.
Speaker 2 (15:42):
Little things that we kind of don't notice.
Speaker 3 (15:45):
I noticed those things, and for me, they're big things
and I'm just so blessed to have them in my life.
Speaker 1 (15:52):
It's beautiful. Thank you so much. 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
(16:12):
mayasthenia gravis or MG community through MG United. MG United
was created by Ergenics to empower 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
(16:33):
myasthenia gravis journey. MG united wants to help make today
a better day. For more information about MG United, visit
mgdashunited dot com. And now back to untold stories. Tell
(16:59):
me about the support group. At what point did you
decide to start a support group from scratch?
Speaker 3 (17:06):
Well, I was living in LA and my husband and
I were like, there's no support group in LA like
USC area. So I talked to my doctor and he
let me use his conference room at that time to
do the Southern California Support group.
Speaker 2 (17:25):
Okay, So I started there.
Speaker 3 (17:27):
I would do it I think once a month, I
can't remember, but anyways, we would do it as conference room,
and then little by little I started doing online Spanish
support group. I got a lot of pushback because I
wanted other support group leaders, especially in southern California.
Speaker 2 (17:46):
Hello, you know, like what people speak Spanish? Percent of
people speak Spanish. So I continue doing it.
Speaker 3 (17:53):
And you know what, even if one patient showed up,
I helped that one patient. Sometimes I wouldn't have people
even show up, and that's okay. I would wait there
for fifteen, maybe sometimes twenty minutes and then nobody shows up. Fine,
but I'm here. Then when we decided to move here
to Texas, I told my husband, you know what, I'm
going to concentrate with the Spanish speaking group. And little
(18:18):
by little I started getting two three, and all of
a sudden it started being international, from Spain, Argentina, Puerto Rico, Columbia, Ecuador,
even Chile. I was like, okay, I'll take it, you know.
And it was really nice because we all were Spanish
(18:41):
speaking community, but from very different cultures, very different countries,
and how they treat their patients, the treatments that they have, everything.
So it was kind of like educating everybody and also
to educating the people here in the US for them
(19:02):
to understand and the blessings that we have. I have
a lady and her daughter from Canada and even though
there's medications that they can provide there that are free.
If it's too expensive, your doctor has to write letters,
you have to go through all these loopholes to maybe
(19:26):
even get it. And people from Spain and educating them
how we do things here in the US, because their
questions were like, well, how many empty patients are there?
And I go, it's aroundabout we don't exactly know. And
he goes, well, why not other people that go to
the doctors don't the doctors put it in a file.
(19:46):
I'm like, no, it's confidential unless we have a release
form saying yes, put my information on the database showing
how many people have the disease. So it's kind of
educating people and it's really nice because people know what
everybody's going through and people that don't feel that they're alone.
Speaker 1 (20:09):
Leah's story is a powerful reminder that having a community
that understands you emotionally and culturally can be just as
critical as any treatment plan for those living with MG,
especially the ones navigating language and cultural barriers. That kind
of connection isn't just comforting, it can be life saving.
Speaker 3 (20:31):
This last meeting that I had in May, I had
a lady from Argentina and a lady that lived in Chicago,
and they were very similar in age. There were professionals,
once a lawyer, the other ones a teacher, so they
both were similar in the struggles of their disease, and
they were able to talk and understand each other. And
(20:53):
the lady from Argentina was just newly diagnosed, so she
was so grateful to be in on the call. My
meetings are every other month. I don't have a time limit,
and this is what's nice. We are here until they
feel comfortable enough to log off and say I feel good.
(21:14):
There's light at the end of the tunnel.
Speaker 2 (21:17):
You're going to be okay.
Speaker 3 (21:19):
It's not an easy journey. It's not going to happen overnight.
And number one I notice with people with my senior
girl is patience is number one key, patience with your
own body. So people come and now I have I
guess almost one hundred people that come and go that
(21:40):
have come into my group.
Speaker 1 (21:42):
How long will some of the meetings last if they're
open ended?
Speaker 2 (21:44):
About three hours?
Speaker 1 (21:46):
Wow, Lea. How do you think healthcare professionals can improve
their understanding of the cultural differences among patients Like you
talked about.
Speaker 3 (21:55):
Number One key is patients a lot of doctors that
only speak English. Spanish is my first language. Yes I
have an accent, Yes I speak English, but you need
to be more plain English so I could understand and
all this medical terminology and also to the understanding. And
(22:17):
then I'm asked, I'm like, well, what else can we
do or what are the side effects?
Speaker 2 (22:23):
Or how am I going to feel?
Speaker 3 (22:24):
Or how it's going to be for them to take
that time and have a sit down and talk and
talk in the language that I can understand, because just
because it's English doesn't mean it's going to be easy
for me to understand. And I don't like saying it,
but dumb it down.
Speaker 1 (22:40):
I mean, if you think about it too, I mean,
obviously people are going through a lot as they're hearing
this information, so you're also going through your emotions. I
get it, that's your job, but you also have to
hear it from understand. My perspective is that this is
a lot that I'm taking in.
Speaker 3 (22:54):
And I'm blessed to have the doctors that I have
Now the company that work for that's part of their
policy is sitting there sort of cultural sensitivity. Culture sensitivity
the patients sit there and talk to you and just
go and do depth any questions that we had. They
won't leave the room until all my questions are answered.
Speaker 1 (23:15):
It sounds like you have found some providers that really
understand that and are taking the time that you need.
Speaker 3 (23:22):
Definitely, and like I tell a lot of new patients,
is you have to have a team, a team of doctors,
starting with your good primary, and then that primary would
lead you to everybody else that you need, because this
disease is not just genrologists. You need a pulmonary for
you're breathing. You need a sleep doctor because most likely
(23:43):
you have a sleep apnea, and good doctors and if
they're not answering those questions, it's okay to go to
another doctor. There's nothing wrong with that. You're not being rude,
you're not being disressed. And this is something that the
rule follower Leah had to learn. I'm sure.
Speaker 1 (24:01):
Oh yes, so, Leah, how has your definition of strength
changed since your diagnosis?
Speaker 2 (24:07):
Oh wow?
Speaker 3 (24:10):
My definition is not before strength it will be like
how many boxes I can carry out work. Now, my
strength is able to have the strength in my mind
that I'm not weak. I am able to do things
(24:31):
that I can do more of I have the strength
in my heart that I can be able to help
out people because of my experience of everything that I've
been through in my life, that I can show that
light and that hope. I tell people it's a speranza.
(24:52):
It's not just a physical thing anymore through spirit. Yeah,
most definitely, Lea.
Speaker 1 (24:59):
What's the most important thing you think people need to
know about cultural differences, especially when dealing with a rare
autoimmune condition.
Speaker 3 (25:07):
People need to understand that even though we are all
different period, human nature is very different. And when we
have these big events in our life, especially when it
has to do with your health, we all go and
lean towards our native language, and we lean to our
(25:31):
native language because that's how we feel safe, that's what
we feel heard, that's how we feel supported. And people
need to have that understanding and a little bit of
compassion for people that we don't look sick, but there's
something wrong and understand that it's we're still human. It
(25:57):
can happen to you, it can happen to them. Remember,
we never wish this on anybody, but it's sad because
how the world is unless it happens under your own house, Yeah,
people are not understanding that's right, but.
Speaker 1 (26:16):
To recognize, like you said, that we're all human, So
these are things that can happen to any one of us.
And what's it like now when someone new joins your
group and tells you I finally feel understood.
Speaker 3 (26:29):
I feel so grateful for them, for us, for my group,
for everybody that shows up, for that one person. I
feel joy inside for myself because I'm taking that step
forward to be there for them that they're not feeling
like I felt, not knowing where to turn or who
(26:49):
to talk to that understands this. I used to have
to drive about three hours to get to a support group,
you know, from San Diego to La because there wasn't
any around and the Zoom wasn't around at that time.
So having the technology, this is a good thing about technology,
(27:10):
be able to communicate to that person. And it feels
really nice to knowing that they're not alone. And I'm like,
I'm not alone either.
Speaker 1 (27:20):
It sounds like they're helping you too.
Speaker 3 (27:22):
Oh yeah, most definitely, because I don't feel alone. It's
different from the English speaking support groups and the Spanish
speaking support groups. It's a totally different vibe. Yeah, I'm
here for them and for me. That's not stress, and
that's what life is. Don't stress. Take you one day
(27:43):
at a time, live your life to your fullest and
what you can, and love it. You know, life is
very precious.
Speaker 1 (27:53):
Well, Leah, You're precious, And thank you so much for
this interview today. I really feel like I learned a
lot from you, and I'm really inspired by you because
I think you really are embodying exactly the things that
people who don't have an autoimmune disease really should be
living by. And thank you so much.
Speaker 3 (28:14):
Oh, it was my pleasure. Thank you so much for
having me, which has got ask us for this stat
I came for im wee plus it.
Speaker 1 (28:25):
A big thank you to Leah for sharing her story
with us today. Her journey shows how deeply culture, language,
and personal experience can shape the way we navigate our
health challenges. It's also a reminder that no matter what
language we speak or where we grow up, there's still
so much power in how we use our voice to
(28:46):
help ourselves and others. Whether you're just starting to ask
questions on your health journey or you've been down this
road before, I hope Leah's story encourages you to trust
your instincts and to seek out the care you need
and deserve. Thanks for listening. Untold Stories Life with the
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
(29:10):
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
Viedelens of Audiography
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