July 5, 2023 • 31 mins
Myasthenia gravis, or MG, affects people of all ages and races and is most commonly diagnosed later in life. However, for Anaya, her MG symptoms began when she was just 12 years old. Anaya went from being an active young athlete to struggling with immobility and school attendance. As a young black girl, Anaya’s age and race demographics complicated her MG diagnosis journey. However, by learning to advocate for herself and acknowledging her physical limitations, Anaya has been able to reframe her life with MG. She is now an ambitious college graduate and champion for other young people learning to live with this rare condition.
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Speaker 1 (00:03):
Hello everyone, and welcome back to Untold Stories Life with
Mayasthenia Gravis, a podcast from iHeartRadio in partnership with our
gen X. I'm your host, Martine Hackett. I'm an Associate
professor and Director of Public Health Programs at Hofstra University,
and as a researcher, professor, and public health expert, I've
spent my career studying the complex realities of healthcare disparities
(00:25):
and the diverse barriers people face. In this podcast, I'm
speaking with real people living with mayasthenia gravis, commonly known
as MG. Every person with MG has a unique story
to tell. By uncovering real life with MG, we will
expand the conversation around this condition and its disproportionate effect
on underserved communities. In each episode, we'll explore how each
(00:49):
MG journey is unique and powerful in its own way.
We'll also share tips on self advocacy and discuss the
role community and caregivers play in the lives of people
living with MG. Mayasthenia Gravis is most commonly found in
women twenty to forty years old and men fifty five
to seventy five years old. However, MG affects people of
(01:09):
all ages our guest today. Anaya was diagnosed with MG
at the age of just thirteen. She navigated her education
with often debilitating symptoms and was treated by doctors who
had never even seen anyone diagnosed with MG under the
age of forty. Anaya is a recent graduate of Drexel University,
where she has earned a degree in Business administration and
(01:31):
public Relations. Being diagnosed with Mayasthenia Gravis at the age
of thirteen, Anaya has often had to approach treatment without
much information on how someone her age would be affected.
Navigating her developing symptoms, she had to give up playing
her favorite sports and struggle to keep a sense of
normalcy at school. As a result, she has become an
(01:51):
amazing advocate for young people living with MG, sharing her
story in the hopes of helping other young people facing
similar challenges. Hi Anaya, Hi, how are you. I'm doing well.
Speaker 2 (02:09):
Thanks.
Speaker 1 (02:10):
It's so great to be able to talk to you today.
So the first question I have for you, Anaya, is
you've had MG for almost half of your life, yeah,
at this point, and I think it would be really
helpful if you wouldn't mind just telling us a little
bit of the story about like when did you first
realize it, you know what something isn't right.
Speaker 2 (02:27):
Yeah, of course.
Speaker 3 (02:28):
So I was formally diagnosed when I was thirteen, but
the year before that I had kind of just hadn't
felt right. I was an athlete as a kid, so
I played a lot of sports. I was super active,
So I think when you're that level of active, you
always kind of notice when something's not right. So I
immediately noticed when my legs weren't exactly working the way
(02:51):
that I was used to them working. I'll never forget.
I was at a basketball game and I had fallen.
When I went to like picked myself back up, it
was like my legs just wouldn't let me. I was
so embarrassed, and I was just like, I don't know
what's going on. My dad was my coach, so he
had to actually like come off of the bench and
(03:12):
like lift me up. But at that point it kind
of came and it went. So that happened for about
six months, and I think the peak of it where
I was, like I said to my parents was like, no,
something's wrong. I was in a softball game and I
had like hit a home run, and instead of making
it around all the bases by the time the ball
(03:33):
got back into the catcher, I had only barely made
it to first base, and it was so bad that
I had to get like escorted off the field. And
as I was walking, like my legs buckled and I
just fell. And my mom was just like, what's going on?
And I was like, I don't know, but we really
need to figure this out now because I'm not one
(03:53):
for public embarrassment. So I was like, I don't want
this to happen again, so if we could figure this out,
that would be great. And I go to the doctor
and he's basically just like, I don't think there's anything
wrong with her. I think all of this is in
her head and she has a lot of stresses in
her life, and that the stress of her life and
her feelings are taking themselves out on her body. So
(04:15):
my parents were like immediately, Okay, that's what he said,
that's what we're going with. And I was like, I
don't think that's accurate, Like, I don't think I have
any more stress than any other person I know. So
we go to another doctor and she says she thinks
(04:35):
I'm having seizures.
Speaker 2 (04:37):
And my mom.
Speaker 3 (04:39):
Works in special education, so she's familiar with what seizures
look like, and she's like, okay, Like I could see
how the falling could look like a seizure. I think
the only thing where I was like, I'm fully coherent,
Like I can speak, i can talk, I can look
at everyone and everything like it's just my body right.
But I immediately was put on seize medication. And if
(05:02):
anybody knows anything about MG, swallowing was really difficult. I
want to say, we're six or seven months from the
original like issue, so all of my symptoms are progressing.
I can't speak as well, I can't swallow. I couldn't
eat solid food. My mom had said at the time,
I lost about like four dress sizes in like six
(05:23):
or seven months because I couldn't eat solid food properly.
And my mom had got me this pillbox. She's like,
you're not taking your medication. I was like, I'm not
going to take it. I don't think this is right.
Even when I was taking the medication, it wasn't doing anything.
I'm still falling. I'm getting much worse now. It's now
it's my arms and my legs and my whole face.
Like that entire year, I couldn't smile in pictures because
(05:45):
my facial muscles wouldn't work. I couldn't see because my
eyelids were very droopy, like it was just everything was snowballing.
And I was like, well, if it was seizures when
the medication had stopped me from falling all the time,
so like that, that's not really working, and she was like,
we'll do one more doctor, okay, right, And I want
to say a week before she made the appointment, my
(06:09):
mom's school district had a rare disease fair and the
illness that she thought the rare disease fair was Gillian Barr.
I'm not sure how you say it, but she was like,
that looks familiar. So she researched it and she came
across the symptoms and was like, that fits. But then
right under it is my sineogravis and she was like,
(06:32):
this feels closer. So she found the closest specialist to us.
We made an appointment, and within ten minutes of talking
to me, he was like, yeah, one hundred percent know
what it is.
Speaker 1 (06:44):
And that led to your final diagnosis of MG.
Speaker 3 (06:46):
Yeah, and that was over a year after I first
started showing symptoms.
Speaker 1 (06:51):
So then you were told you had a rare disease.
What was going through your head?
Speaker 2 (06:55):
Well, first, I.
Speaker 3 (06:56):
Was scared because we don't know what it is. It
could be something completely carible, right, it could be something
easily fixed and I could get back to my life.
But the first thing my specialist said was basically, like
the way that you're living your life now is not
going to be able to be how you continue to
live your life. Oh god, Wow, even with medication, it
(07:19):
may be a while until you can play sports again.
It may be a while until you're able to walk
regularly again.
Speaker 2 (07:25):
It may be a while until you can see regularly
or speak regularly.
Speaker 3 (07:30):
So I was scared, but I will say even at
the time I was very numb, I was still very well,
you're gonna give.
Speaker 2 (07:37):
Me medication and everything's gonna be fine. I was the
youngest patient he had ever had.
Speaker 1 (07:42):
Wow.
Speaker 3 (07:42):
So he immediately let me know that, like his usual
cocktail that he would use for MG patients, he couldn't
use on me because I was thirteen and I maybe
wanted to have children one day. I was still going
through puberty. So there's so many medications that were immediately
not on the table for me that would have progressed
my treatment faster. There was a lot of adult things
(08:06):
that I now had to think about, Like I want
to say, a week later, I had to talk about
freezing my eggs. I always say that, like I feel
like I grew up overnight after that conversation.
Speaker 1 (08:15):
Yeah, but then you finally had this diagnosis. After that,
you know, all that time of not knowing what about
your family? How did they react to this diagnosis?
Speaker 3 (08:25):
It was really hard for everyone. For my mom, I think,
as moms do, had a plan for what she thought
my life would look like, and now this completely throws
that off the track. So it took her a while
to really wrap her head around it and be able
to talk about it. For my dad, who coached all
of the sports I was playing at the time, so
(08:48):
he was like, I don't even know what to do
with this, Like I got into coaching because you wanted
to play sports, because you like sports. He loves coaching, yes,
but like I know, he planned on seeing me through
my athletic career through high school. So I know that
was really hard for him and hard for me to
like grieve that part of myself because that was something
I knew. I wouldn't be able to do anymore.
Speaker 1 (09:10):
Yeah, so everybody had to you know, reset It sounds like,
you know, to just figure out, all right, how are
we going to live our life now with this information?
How do you think that your age played a role
with your interaction with your healthcare providers?
Speaker 3 (09:24):
I will say, up until we found my MG specialists,
no doctor had ever spoken to me directly. Everything was
directed to my mom. So that really frustrated me. And
I was just like, these are questions she can't even answer.
She can't answer how I feel or what's happening to
my body. So until I spoke to my specialists, I
just felt very silenced in the process, which is probably
(09:46):
why I rebelled the way that I did, and was like,
I'm just not going to take anything to give me
because you're not speaking to me. He asked like the
run of the mill questions, and he looked at me
and he was like silent for like ten seconds, and
he was like, when you drink things, does it come
out your nose? And I was like, yeah, that's not
a normal thing, and he was like no. Then he
(10:07):
kind of like rattled off this list of things and
I was like yes, and yes and yes, and it
was the first time if ever felt anybody was addressing me.
He didn't mince his words with me because he was
a very you're going through an adult experience, so I'm
going to treat you like an adult if that's what
you would like, and that's what I wanted. So if
things were like hard or harsh, he said it softly,
(10:28):
but he still said it. You know, he didn't beat
around the bush or be like, oh, yeah, you're gonna
feel great after this if that's not true.
Speaker 2 (10:38):
So like I really appreciated that.
Speaker 1 (10:41):
So continuing thinking about like your young age when you're
and you're still young too, by the way, how do
you think that played a role in that time it
took you to get diagnosed.
Speaker 3 (10:50):
Yeah, I think my age rolled it out, my race
rolled it out like a young black girl. Nobody was
expecting that. But I also just think had someone taking
the time to ask me what was going on, we
might have gotten there sooner.
Speaker 2 (11:05):
Thinking back in.
Speaker 1 (11:06):
Terms of you mentioned that you kind of first realize
these symptoms because you were an athlete and you were
participating in all these sports. Your dad was your coach.
Realizing that athletics, as you said, might not any longer
be a part of your life. Did you find other
hobbies and interests to sort of fill that void?
Speaker 3 (11:21):
I did eventually, being in athletics. I think it's set
a really great foundation for who I am as a
person and really helped me figure out like the types
of things that I was attracted to. But I think
in spending so much time by myself and spending so
much time at home, I went more so down a
creative path. I got super into TV. I started bullet journaling.
Speaker 1 (11:44):
And so bullet journaling, yeah, is that just sort of
like capturing your thoughts on paper or.
Speaker 3 (11:49):
So, like you journal, but like you take the time
to like put pictures on the page and you rip
things out from magazines and words and like you do
markers and drawings and stickers and everything. So like it's
a very like time intensive process. So that was a
really great way of me to get my thoughts down.
I read a lot. I really took to like social media.
Speaker 2 (12:11):
I didn't have any social media at the time when
I was.
Speaker 3 (12:13):
Diagnosed, and then like the next year I had like
Instagram and Twitter and like everything.
Speaker 2 (12:18):
So I had a.
Speaker 3 (12:19):
Very fun online friend community that was super helpful. That
I still have to this day. That I was just
kind of able to step outside of myself and like
immerse myself into something else and not be thinking about
my problems for the first time, Like, my life isn't
block scheduled. I have all this free time to read
and write and think. I want to say, I wrote
(12:40):
like a two novels or something when I was in school.
Speaker 2 (12:45):
Yeah.
Speaker 3 (12:46):
Why. I always really loved writing, and I was like, well,
I have the time now, I'm just gonna do it.
Speaker 2 (12:50):
So I did.
Speaker 3 (12:51):
It was just a really great outlet that I don't
think I would have had the time to explore otherwise.
Speaker 1 (12:56):
Absolutely. And when you think about that, you mentioned you,
you know, sort of start connecting to people via social media.
Were you able to connect with other children or teens
living with MG.
Speaker 3 (13:06):
I did not meet anyone with MG until I went
to an in person support group in New York, like
even anyone online like and I would put myself out there.
I was very hi at this age.
Speaker 2 (13:18):
I have MG. Anybody else in radio silence?
Speaker 3 (13:22):
Wow, I'll never forget the first time I walked into
the support group meeting. It was in the hospital and
my mom and I drove from New Jerseys was like
to a two hour drive. So I go and I
go to the room that's like on the email that
we got, and like I look through like the little
glass people on the door, and everyone there is like
(13:43):
sixty plus and so like I got scared and I
was like, I think I might be in the wrong place.
So I just turn around and I walk away, and
like as I'm going back to get in the elevator,
my mom's coming up the elevator. She's like, well, why
didn't you go in? And I was like, I think
we're in the wrong place, and she was like, no,
we're not.
Speaker 2 (14:00):
Come on show.
Speaker 3 (14:01):
She like dragged me back over to the room and
she's like we go in, and like I introduced myself
and they're like how old are you? And I want
to say I was fourteen at the time. And there
were incredible groups, so welcoming, so loving. I'm in touch
with some of them still now, wonderful, but it was
so scary. I feel like in that moment, I was like,
(14:21):
am I really by myself in this? Like is anybody
else experiencing what I'm experiencing? Because for a lot of them,
they didn't get diagnosed until they were in their fifties
or their forties, so they didn't have to go through puberty,
go through college, go through like their careers with a
rare disease. Like for most of them, they were like,
I didn't get diagnosed, soil I was retired.
Speaker 1 (14:42):
And then in addition to the struggle of not finding
peers in your age group with MG, you were also
still going to school with a rare disease and navigating
a familiar world in a new way. Tell me about
that experience. Where did you find the need to advocate
for yourself the most?
Speaker 3 (14:59):
Navigate my school system was the hardest thing that I
had to do during that time, because the thing was
part of it was that they thought because I was
physically disabled, I was also mentally disabled or I had
some kind of learning disability as well. I did testing
every other semester to like prove that I didn't have
a learning disability, and they were still like, oh, like no,
(15:21):
like you're fine. I was like, I know, my body
not working the way that I would like to say,
we're not working quote unquote properly has nothing to do
with my mental capability. So like, no matter what we said,
it was like nobody was listening to that part of it,
So it was very difficult for me to kind of
get the education that I wanted. So, like there were
(15:42):
times where my mom and I had to really fight
to get put in like an honors class or an
ap class where I had the grades, I had the work,
but the teachers were like, well, she doesn't come to class,
so I can't put her in this class. So like
that was really difficult. I just don't think anybody realized
how quickly you can fall behind when you're only in
school two days a week. Even with me understanding everything
(16:06):
that was going on, I was still just missing the lessons.
You're missing the conversational part, right, You're missing interacting with
your peers and engaging in debates and conversations, or like
the learning games that you would get to play to
really like enrich what you're learning. Like, even with all
of the best tutoring and instructing, that's still such a
(16:27):
crucial part that I wasn't getting.
Speaker 1 (16:31):
We'll be back with more untold stories. Life with may
Asthenia Gravis. After a quick break as a global immunology
company committed to improving the lives of people living with
severe autoimmune diseases. Our Genics is dedicated to partnering with
advocacy organizations, including the Muscular Dystrophee Association and Muscular Dystrophe
(16:56):
Canada in support of the MG community. The Muscular distri
Association or MDA, aims to transform the lives of people
affected by neuromuscular disorders through funding for breakthrough research, providing
care from day one, and empowering families with support. For
more information about the MDA, visit www dot MDA dot org.
(17:17):
Muscular Dystrophy Canada or MDC is committed to enhancing the
lives of Canadians with neuromuscular disorders by continually working to
provide ongoing support and resources and relentlessly seeking cures through
well funded research. MDC invites Canadians with MG to participate
in a survey related to their experience. If you or
(17:37):
someone you know may be interested, email the MDC at
Research at Muscle dot CAA and for additional information about MDC,
visit www dot Muscle dot CAA. And now back to
untold stories Life with Mayasthenia Gravis. Obviously you graduated high school, yes,
(18:02):
but was that at risk at any time? Considering the
struggle that you mentioned in terms of the level of
instruction that you were getting.
Speaker 3 (18:10):
So I was never afraid of graduating. What I was
afraid of actually was getting into college because I had
been sick for so long. I didn't have extracurriculars. I
didn't have an amazing GPA like I had a great one.
I had an okay, pretty good SAT score, but like
not like on my highest percentile. Right, So I was
(18:32):
so worried about standing out amongst all of these people
who have had these amazing high school careers, right the athletes,
and you played this instrument and you did this, and
you went here, and I was like, I just don't
have that, and I have to present myself in a
way that explains though I don't have that, I'm still exceptional.
(18:53):
And that was the scary part. So I think just
the accomplishment of graduating high school was something amazing for me,
just because at so many points in my high school
career people didn't necessarily want that to be something that
happened for me. And I know a lot of other
people with your diseases have that same experience of people
thinking that your only thing that you should be doing
is surviving and that you shouldn't be thriving.
Speaker 1 (19:16):
And so I mean, reflecting back now as a recent
college graduate, can you think about what you might have
gained from that experience.
Speaker 3 (19:26):
I will never pass up an opportunity to do something
because I spent so much time at home dreaming about
being able to do so many things. So I'm never
going to take for granted having an opportunity to do anything.
It's gotten me very far in college, internships, and opportunities.
And I will say the second thing is, I'm very
(19:46):
good at advocating for myself. I'm very good at like, no,
this is what I mean, this is what I need,
and this is what I need you to do for me.
Being in that scenario, you have to learn that, Like
my mom can only to the school and meet with
you guys so many times, at some point, I'm going
to have to speak for myself. So I had to
(20:06):
figure out how to do that from the time I
was thirteen to the time I graduated high school.
Speaker 1 (20:12):
And can you talk a little bit more about that.
What was what is advocating for yourself, especially at that age?
What did that look like?
Speaker 3 (20:18):
I think for me, I think it was very putting
my foot down and just saying no to something, or
for the first time in my life, being able to
say I can't do that. And I think when you're
a kid, especially when you're an athlete, I can't. It's
not something you ever say. So having to learn how
to say not only no, but I can't do that,
(20:40):
that's pushing me past my physical limit, and the rippercussions
of doing that is going to be so much worse
than if I do it. So I cannot do that
and I'm saying no. I think that's really been the
most important thing of learning my body and learning when
my body says to stop, and making sure that I
put myself in the position to be able to read
(21:02):
my body well. And I also think it taught me
a certain level of just understanding other people, and that
I came across a lot of people who just didn't
understand what I was going through. And in the beginning
I got mad at people who didn't understand what I
was going through. But as I kind of went through
(21:23):
the experience and I got older, I just realized I
can't get mad at somebody for not understanding experience they've
never had. Then it was hard to make friends for
a while just because you don't want people to be
friends with you, I had a pity you don't want
people to be friends with you because they think you
need help, Like you want people to be friends with
you because they like you or because they enjoy spending
(21:46):
time with you. So it was really difficult for me
to like solidly make friends and have a group of
friends because I was like, are you friends with me
because you want to be? And then that kind of
led to a point in my life where I was
like letting anybody treat me however they wanted, because I
was so happy to have friends again. And so it
(22:06):
took a while for me to be able to be like, no,
you deserve to have friends, whether you're disabled or not,
whether you have this illness or not, and good friends
will treat you well.
Speaker 1 (22:17):
And how did that go once you made that decision?
Speaker 3 (22:20):
It was really hard.
Speaker 2 (22:21):
I cut a lot of people out of my life. Unfortunately.
Speaker 3 (22:24):
I think being a person with a disability has always
made it seem like the person with a disability has
to be the bigger person. And it's taken these last
i want to say, two or three years of college
for me to be like I don't always have to
be the bigger person. I can decide that I don't
want to deal with something and not deal with it right,
And I think it's just it's difficult to frame your
(22:45):
mind like that because there was a time period of
two or three years, right, I just didn't have anyone.
So the friends and people that I do have in
my life I hold on to very tightly and very dearly.
But on the flip side, you have to make sure
that you're keeping people around for the right reason and
that you have the support system. Because when my MG
(23:06):
does flair, my parents are in New Jersey. The only
people I have around me are my friends, so I
need them to help me pull me up by my bootstraps.
I need them to take me to the hospital and
know what medications I have and be able to help
me advocate for myself.
Speaker 2 (23:20):
If I can't.
Speaker 3 (23:21):
And I just had incredible people. My partner was very transparent.
My partner's also disabled, so she understands kind of the
nuance of it all. But more importantly, it's such an
amazing thing to be able to be that kind of
vulnerable with your chosen people, right, like see me fall
(23:43):
or to see me not be able to talk, or
in a hospital bed with a million and one things
attached to me, or in the emergency room with me
when I'm like, hey, I think something's about to go
bad here. And to have those people not turn away
from you, can just embrace you and be there for
you has been a really amazing thing that I've so
(24:05):
grateful to experience.
Speaker 1 (24:09):
Like you said, that's how you know who are your
real people exactly, And when that did happen, I mean,
you had your support, but then you also probably had
to deal with the doctors now in Philadelphia, you know,
without your mom, how did that process go, or standing
up for yourself with the doctors in that different situation.
Speaker 2 (24:28):
At first, it was.
Speaker 3 (24:29):
A little scary because when I had flaars and things
back at home, we always went to the same hospital
that my specialist was at, so I was never scared.
Speaker 2 (24:36):
Of going to the hospital then.
Speaker 3 (24:38):
But now it's a little bit different because now I'm
an adult. I think the biggest part of like understanding
that transition and like being able to be a good
advocate for myself is that I know my own medical
history cover to cover, so that makes it a lot
easier for physicians and doctors to take me seriously because
(24:59):
I I know that everything I'm saying once you pull
up my chart is exact, and just having to be
able to say, like, I've experienced this a million times
for the last ten years.
Speaker 2 (25:09):
I know exactly what this is. That's why I came.
Speaker 1 (25:13):
And how did they react to that? I mean, wow,
to have a young person kind of coming in and
being like, look, let me tell you this is what's
going on.
Speaker 3 (25:20):
Some of them were very taken aback, like very much
taken it back. Some of the nurses did not enjoy
me because I was just very I.
Speaker 2 (25:28):
Know exactly what I need.
Speaker 3 (25:29):
I've been in this situation dozens of times, so I
know exactly what I'm gonna need once I get there.
So like I admittedly get very impatient because I know
what each step is going to be, but I still
have to wait for all the paperwork to catch up
to what's happening. But they're usually quite taken it back
that I'm prepared. I never look scared or anything. And
(25:52):
I think for some of them in the emergence room
because I always go through the emergency room, some of
them have never even heard of MG right, so you
have to learn about it. From me, which I know
is frustrating. So that's part of it, and I think
the other part of it is just I'm going to
say something if you're doing something outside of the normal
(26:12):
route of treatment, like you can't try something here, you
can't delay something here, like I know exactly what's supposed
to happen, and if anything outside of that happens, you're
going to hear from me. And I think that creates
a certain level of stress for them, just because they're like,
I have no wiggle room in this scenario. I was like,
that is absolutely right, you have none.
Speaker 1 (26:34):
And obviously you have, like you said, all that experience,
but you know, based on those experiences though, there are
other bipop people are people from marginalized communities with MG
who might not have that same kind of confidence and
ability to do that and to overcome those disparities that
they are encountering. So what are some of those things
(26:55):
that you would recommend that people in that situation do.
Speaker 3 (27:00):
I think a big part of it is one, I
never go to the hospital by myself. Somebody needs to
be there with me. That's always been super important because
I always have somebody to be able to say, like, yes,
that doctor said that yes they treated you like this,
or yes they did this. It's not just my word
for it. Like I said, another really big thing is
just always knowing my medical history cover to cover and
(27:22):
knowing like when you ask this question, I have an
answer like there's never I don't know because I don't
think there's room four and I don't know.
Speaker 1 (27:31):
So if you could give advice to a young person
with an MG diagnosis who might be listening today, what
would that be.
Speaker 3 (27:38):
I think the first thing I would say is to
take everything and stride. It seems like a very daunting
process to get diagnosed and start the medications and do
all of this stuff, but listen to yourself and listen
to your body. You know what's going on in your
body better than anybody else. Secondly, having a support system
(28:01):
beyond your parents is really important because I love my
parents so much and they were so supportive through this
whole process. But I think a really big part of
what our relationship became during the time was that for
them it was like we were all experiencing MG together,
but for me, I was the only one that actually
(28:21):
had it. I was the only one with the symptoms
and the struggles and the problems. So it's important to
have peers, even if they aren't experiencing what you're experiencing.
They're your age mates and they think like you. They
understand how your brain works and what thought process you're
going through. I think the last thing I would say
is take the time to mourn yourself and then take
(28:46):
the time to learn yourself again. I've always said that
if I could redo my life, I would not remove
MG from my story. Wo I think it's made me
an incredible person. I think it's changed the trajectory of
who I was going to become in the best way.
I think it's made me stronger in so many ways.
(29:09):
I think it's shifted my perspective on so many things.
So I think it's important to know that, no matter
how hard it gets, you are going to come out
on the other side of it better because you spend
so much time learning yourself. So take the time to
learn what you like, what do you want to do?
Who are you with this illness? Who are you without it?
(29:32):
I think it's really really important to embrace MG in
your life and not villainize it and kind of just
take it with you as you move because it's a
chronic illness, You'll have it forever, even if you're not
showing symptoms, it's always going to be there. So I
think it's just really important to kind of just relearn
(29:52):
who you are with MG and become okay with that
person so that you're not somebody who sits in self
hatred because of that part with yourself.
Speaker 1 (30:01):
Wonderful. Thank you so much, Anaya. That's advice that I
think any adult should have, is just to be able
to take that time to know yourself and you know what,
who you were as a young person might not be
the person that you are now, even if you don't
have a rare disease. And so it sounds like you
absolutely have grown from this experience in a way that
(30:23):
makes you who you are, and that's a pretty awesome person.
Speaker 2 (30:27):
Thank you so much.
Speaker 3 (30:28):
I'm really glad to just be able to talk about
it and hopefully have a lot of people resonate with
me in my story and kind of take MG for
what it is and keep pushing forward.
Speaker 1 (30:43):
Anaya's journey has already been filled with so much triumph,
overcoming the obstacles of MG while continuing to grow into
an inspiring young disabled woman from dealing with indecision, from
doctors to learning how to have the strength and courage
to find her place in the world. Anaya is a
shining example of perseverance for many, regardless of age. Navigating
(31:05):
MG is a difficult to confusing time, But from Anaya story,
I know I have learned how important it is to
ask questions and to trust your support system and intuition.
Thanks again to Anya for sharing her story today. Please
join us again next week for a very special episode
of Untold Stories. Untold Stories Life with Mayasthenia Gravis is
(31:28):
produced by iHeartRadio in partnership with Argenics and Closer Look,
and hosted by me Martine Hackett. Our executive producer is
Mali Sosha, our EP of Post production is Matt Stillo,
and our producer is Sierra Kaiser. This episode was edited
by Sierra Spreen and written and produced by Tyree Rush.
Hello everyone, and welcome back to Untold Stories Life with
Mayasthenia Gravis, a podcast from iHeartRadio in partnership with our
gen X. I'm your host, Martine Hackett. I'm an Associate
professor and Director of Public Health Programs at Hofstra University,
and as a researcher, professor, and public health expert, I've
spent my career studying the complex realities of healthcare disparities
(00:25):
and the diverse barriers people face. In this podcast, I'm
speaking with real people living with mayasthenia gravis, commonly known
as MG. Every person with MG has a unique story
to tell. By uncovering real life with MG, we will
expand the conversation around this condition and its disproportionate effect
on underserved communities. In each episode, we'll explore how each
(00:49):
MG journey is unique and powerful in its own way.
We'll also share tips on self advocacy and discuss the
role community and caregivers play in the lives of people
living with MG. Mayasthenia Gravis is most commonly found in
women twenty to forty years old and men fifty five
to seventy five years old. However, MG affects people of
(01:09):
all ages our guest today. Anaya was diagnosed with MG
at the age of just thirteen. She navigated her education
with often debilitating symptoms and was treated by doctors who
had never even seen anyone diagnosed with MG under the
age of forty. Anaya is a recent graduate of Drexel University,
where she has earned a degree in Business administration and
(01:31):
public Relations. Being diagnosed with Mayasthenia Gravis at the age
of thirteen, Anaya has often had to approach treatment without
much information on how someone her age would be affected.
Navigating her developing symptoms, she had to give up playing
her favorite sports and struggle to keep a sense of
normalcy at school. As a result, she has become an
(01:51):
amazing advocate for young people living with MG, sharing her
story in the hopes of helping other young people facing
similar challenges. Hi Anaya, Hi, how are you. I'm doing well.
Speaker 2 (02:09):
Thanks.
Speaker 1 (02:10):
It's so great to be able to talk to you today.
So the first question I have for you, Anaya, is
you've had MG for almost half of your life, yeah,
at this point, and I think it would be really
helpful if you wouldn't mind just telling us a little
bit of the story about like when did you first
realize it, you know what something isn't right.
Speaker 2 (02:27):
Yeah, of course.
Speaker 3 (02:28):
So I was formally diagnosed when I was thirteen, but
the year before that I had kind of just hadn't
felt right. I was an athlete as a kid, so
I played a lot of sports. I was super active,
So I think when you're that level of active, you
always kind of notice when something's not right. So I
immediately noticed when my legs weren't exactly working the way
(02:51):
that I was used to them working. I'll never forget.
I was at a basketball game and I had fallen.
When I went to like picked myself back up, it
was like my legs just wouldn't let me. I was
so embarrassed, and I was just like, I don't know
what's going on. My dad was my coach, so he
had to actually like come off of the bench and
(03:12):
like lift me up. But at that point it kind
of came and it went. So that happened for about
six months, and I think the peak of it where
I was, like I said to my parents was like, no,
something's wrong. I was in a softball game and I
had like hit a home run, and instead of making
it around all the bases by the time the ball
(03:33):
got back into the catcher, I had only barely made
it to first base, and it was so bad that
I had to get like escorted off the field. And
as I was walking, like my legs buckled and I
just fell. And my mom was just like, what's going on?
And I was like, I don't know, but we really
need to figure this out now because I'm not one
(03:53):
for public embarrassment. So I was like, I don't want
this to happen again, so if we could figure this out,
that would be great. And I go to the doctor
and he's basically just like, I don't think there's anything
wrong with her. I think all of this is in
her head and she has a lot of stresses in
her life, and that the stress of her life and
her feelings are taking themselves out on her body. So
(04:15):
my parents were like immediately, Okay, that's what he said,
that's what we're going with. And I was like, I
don't think that's accurate, Like, I don't think I have
any more stress than any other person I know. So
we go to another doctor and she says she thinks
(04:35):
I'm having seizures.
Speaker 2 (04:37):
And my mom.
Speaker 3 (04:39):
Works in special education, so she's familiar with what seizures
look like, and she's like, okay, Like I could see
how the falling could look like a seizure. I think
the only thing where I was like, I'm fully coherent,
Like I can speak, i can talk, I can look
at everyone and everything like it's just my body right.
But I immediately was put on seize medication. And if
(05:02):
anybody knows anything about MG, swallowing was really difficult. I
want to say, we're six or seven months from the
original like issue, so all of my symptoms are progressing.
I can't speak as well, I can't swallow. I couldn't
eat solid food. My mom had said at the time,
I lost about like four dress sizes in like six
(05:23):
or seven months because I couldn't eat solid food properly.
And my mom had got me this pillbox. She's like,
you're not taking your medication. I was like, I'm not
going to take it. I don't think this is right.
Even when I was taking the medication, it wasn't doing anything.
I'm still falling. I'm getting much worse now. It's now
it's my arms and my legs and my whole face.
Like that entire year, I couldn't smile in pictures because
(05:45):
my facial muscles wouldn't work. I couldn't see because my
eyelids were very droopy, like it was just everything was snowballing.
And I was like, well, if it was seizures when
the medication had stopped me from falling all the time,
so like that, that's not really working, and she was like,
we'll do one more doctor, okay, right, And I want
to say a week before she made the appointment, my
(06:09):
mom's school district had a rare disease fair and the
illness that she thought the rare disease fair was Gillian Barr.
I'm not sure how you say it, but she was like,
that looks familiar. So she researched it and she came
across the symptoms and was like, that fits. But then
right under it is my sineogravis and she was like,
(06:32):
this feels closer. So she found the closest specialist to us.
We made an appointment, and within ten minutes of talking
to me, he was like, yeah, one hundred percent know
what it is.
Speaker 1 (06:44):
And that led to your final diagnosis of MG.
Speaker 3 (06:46):
Yeah, and that was over a year after I first
started showing symptoms.
Speaker 1 (06:51):
So then you were told you had a rare disease.
What was going through your head?
Speaker 2 (06:55):
Well, first, I.
Speaker 3 (06:56):
Was scared because we don't know what it is. It
could be something completely carible, right, it could be something
easily fixed and I could get back to my life.
But the first thing my specialist said was basically, like
the way that you're living your life now is not
going to be able to be how you continue to
live your life. Oh god, Wow, even with medication, it
(07:19):
may be a while until you can play sports again.
It may be a while until you're able to walk
regularly again.
Speaker 2 (07:25):
It may be a while until you can see regularly
or speak regularly.
Speaker 3 (07:30):
So I was scared, but I will say even at
the time I was very numb, I was still very well,
you're gonna give.
Speaker 2 (07:37):
Me medication and everything's gonna be fine. I was the
youngest patient he had ever had.
Speaker 1 (07:42):
Wow.
Speaker 3 (07:42):
So he immediately let me know that, like his usual
cocktail that he would use for MG patients, he couldn't
use on me because I was thirteen and I maybe
wanted to have children one day. I was still going
through puberty. So there's so many medications that were immediately
not on the table for me that would have progressed
my treatment faster. There was a lot of adult things
(08:06):
that I now had to think about, Like I want
to say, a week later, I had to talk about
freezing my eggs. I always say that, like I feel
like I grew up overnight after that conversation.
Speaker 1 (08:15):
Yeah, but then you finally had this diagnosis. After that,
you know, all that time of not knowing what about
your family? How did they react to this diagnosis?
Speaker 3 (08:25):
It was really hard for everyone. For my mom, I think,
as moms do, had a plan for what she thought
my life would look like, and now this completely throws
that off the track. So it took her a while
to really wrap her head around it and be able
to talk about it. For my dad, who coached all
of the sports I was playing at the time, so
(08:48):
he was like, I don't even know what to do
with this, Like I got into coaching because you wanted
to play sports, because you like sports. He loves coaching, yes,
but like I know, he planned on seeing me through
my athletic career through high school. So I know that
was really hard for him and hard for me to
like grieve that part of myself because that was something
I knew. I wouldn't be able to do anymore.
Speaker 1 (09:10):
Yeah, so everybody had to you know, reset It sounds like,
you know, to just figure out, all right, how are
we going to live our life now with this information?
How do you think that your age played a role
with your interaction with your healthcare providers?
Speaker 3 (09:24):
I will say, up until we found my MG specialists,
no doctor had ever spoken to me directly. Everything was
directed to my mom. So that really frustrated me. And
I was just like, these are questions she can't even answer.
She can't answer how I feel or what's happening to
my body. So until I spoke to my specialists, I
just felt very silenced in the process, which is probably
(09:46):
why I rebelled the way that I did, and was like,
I'm just not going to take anything to give me
because you're not speaking to me. He asked like the
run of the mill questions, and he looked at me
and he was like silent for like ten seconds, and
he was like, when you drink things, does it come
out your nose? And I was like, yeah, that's not
a normal thing, and he was like no. Then he
(10:07):
kind of like rattled off this list of things and
I was like yes, and yes and yes, and it
was the first time if ever felt anybody was addressing me.
He didn't mince his words with me because he was
a very you're going through an adult experience, so I'm
going to treat you like an adult if that's what
you would like, and that's what I wanted. So if
things were like hard or harsh, he said it softly,
(10:28):
but he still said it. You know, he didn't beat
around the bush or be like, oh, yeah, you're gonna
feel great after this if that's not true.
Speaker 2 (10:38):
So like I really appreciated that.
Speaker 1 (10:41):
So continuing thinking about like your young age when you're
and you're still young too, by the way, how do
you think that played a role in that time it
took you to get diagnosed.
Speaker 3 (10:50):
Yeah, I think my age rolled it out, my race
rolled it out like a young black girl. Nobody was
expecting that. But I also just think had someone taking
the time to ask me what was going on, we
might have gotten there sooner.
Speaker 2 (11:05):
Thinking back in.
Speaker 1 (11:06):
Terms of you mentioned that you kind of first realize
these symptoms because you were an athlete and you were
participating in all these sports. Your dad was your coach.
Realizing that athletics, as you said, might not any longer
be a part of your life. Did you find other
hobbies and interests to sort of fill that void?
Speaker 3 (11:21):
I did eventually, being in athletics. I think it's set
a really great foundation for who I am as a
person and really helped me figure out like the types
of things that I was attracted to. But I think
in spending so much time by myself and spending so
much time at home, I went more so down a
creative path. I got super into TV. I started bullet journaling.
Speaker 1 (11:44):
And so bullet journaling, yeah, is that just sort of
like capturing your thoughts on paper or.
Speaker 3 (11:49):
So, like you journal, but like you take the time
to like put pictures on the page and you rip
things out from magazines and words and like you do
markers and drawings and stickers and everything. So like it's
a very like time intensive process. So that was a
really great way of me to get my thoughts down.
I read a lot. I really took to like social media.
Speaker 2 (12:11):
I didn't have any social media at the time when
I was.
Speaker 3 (12:13):
Diagnosed, and then like the next year I had like
Instagram and Twitter and like everything.
Speaker 2 (12:18):
So I had a.
Speaker 3 (12:19):
Very fun online friend community that was super helpful. That
I still have to this day. That I was just
kind of able to step outside of myself and like
immerse myself into something else and not be thinking about
my problems for the first time, Like, my life isn't
block scheduled. I have all this free time to read
and write and think. I want to say, I wrote
(12:40):
like a two novels or something when I was in school.
Speaker 2 (12:45):
Yeah.
Speaker 3 (12:46):
Why. I always really loved writing, and I was like, well,
I have the time now, I'm just gonna do it.
Speaker 2 (12:50):
So I did.
Speaker 3 (12:51):
It was just a really great outlet that I don't
think I would have had the time to explore otherwise.
Speaker 1 (12:56):
Absolutely. And when you think about that, you mentioned you,
you know, sort of start connecting to people via social media.
Were you able to connect with other children or teens
living with MG.
Speaker 3 (13:06):
I did not meet anyone with MG until I went
to an in person support group in New York, like
even anyone online like and I would put myself out there.
I was very hi at this age.
Speaker 2 (13:18):
I have MG. Anybody else in radio silence?
Speaker 3 (13:22):
Wow, I'll never forget the first time I walked into
the support group meeting. It was in the hospital and
my mom and I drove from New Jerseys was like
to a two hour drive. So I go and I
go to the room that's like on the email that
we got, and like I look through like the little
glass people on the door, and everyone there is like
(13:43):
sixty plus and so like I got scared and I
was like, I think I might be in the wrong place.
So I just turn around and I walk away, and
like as I'm going back to get in the elevator,
my mom's coming up the elevator. She's like, well, why
didn't you go in? And I was like, I think
we're in the wrong place, and she was like, no,
we're not.
Speaker 2 (14:00):
Come on show.
Speaker 3 (14:01):
She like dragged me back over to the room and
she's like we go in, and like I introduced myself
and they're like how old are you? And I want
to say I was fourteen at the time. And there
were incredible groups, so welcoming, so loving. I'm in touch
with some of them still now, wonderful, but it was
so scary. I feel like in that moment, I was like,
(14:21):
am I really by myself in this? Like is anybody
else experiencing what I'm experiencing? Because for a lot of them,
they didn't get diagnosed until they were in their fifties
or their forties, so they didn't have to go through puberty,
go through college, go through like their careers with a
rare disease. Like for most of them, they were like,
I didn't get diagnosed, soil I was retired.
Speaker 1 (14:42):
And then in addition to the struggle of not finding
peers in your age group with MG, you were also
still going to school with a rare disease and navigating
a familiar world in a new way. Tell me about
that experience. Where did you find the need to advocate
for yourself the most?
Speaker 3 (14:59):
Navigate my school system was the hardest thing that I
had to do during that time, because the thing was
part of it was that they thought because I was
physically disabled, I was also mentally disabled or I had
some kind of learning disability as well. I did testing
every other semester to like prove that I didn't have
a learning disability, and they were still like, oh, like no,
(15:21):
like you're fine. I was like, I know, my body
not working the way that I would like to say,
we're not working quote unquote properly has nothing to do
with my mental capability. So like, no matter what we said,
it was like nobody was listening to that part of it,
So it was very difficult for me to kind of
get the education that I wanted. So, like there were
(15:42):
times where my mom and I had to really fight
to get put in like an honors class or an
ap class where I had the grades, I had the work,
but the teachers were like, well, she doesn't come to class,
so I can't put her in this class. So like
that was really difficult. I just don't think anybody realized
how quickly you can fall behind when you're only in
school two days a week. Even with me understanding everything
(16:06):
that was going on, I was still just missing the lessons.
You're missing the conversational part, right, You're missing interacting with
your peers and engaging in debates and conversations, or like
the learning games that you would get to play to
really like enrich what you're learning. Like, even with all
of the best tutoring and instructing, that's still such a
(16:27):
crucial part that I wasn't getting.
Speaker 1 (16:31):
We'll be back with more untold stories. Life with may
Asthenia Gravis. After a quick break as a global immunology
company committed to improving the lives of people living with
severe autoimmune diseases. Our Genics is dedicated to partnering with
advocacy organizations, including the Muscular Dystrophee Association and Muscular Dystrophe
(16:56):
Canada in support of the MG community. The Muscular distri
Association or MDA, aims to transform the lives of people
affected by neuromuscular disorders through funding for breakthrough research, providing
care from day one, and empowering families with support. For
more information about the MDA, visit www dot MDA dot org.
(17:17):
Muscular Dystrophy Canada or MDC is committed to enhancing the
lives of Canadians with neuromuscular disorders by continually working to
provide ongoing support and resources and relentlessly seeking cures through
well funded research. MDC invites Canadians with MG to participate
in a survey related to their experience. If you or
(17:37):
someone you know may be interested, email the MDC at
Research at Muscle dot CAA and for additional information about MDC,
visit www dot Muscle dot CAA. And now back to
untold stories Life with Mayasthenia Gravis. Obviously you graduated high school, yes,
(18:02):
but was that at risk at any time? Considering the
struggle that you mentioned in terms of the level of
instruction that you were getting.
Speaker 3 (18:10):
So I was never afraid of graduating. What I was
afraid of actually was getting into college because I had
been sick for so long. I didn't have extracurriculars. I
didn't have an amazing GPA like I had a great one.
I had an okay, pretty good SAT score, but like
not like on my highest percentile. Right, So I was
(18:32):
so worried about standing out amongst all of these people
who have had these amazing high school careers, right the athletes,
and you played this instrument and you did this, and
you went here, and I was like, I just don't
have that, and I have to present myself in a
way that explains though I don't have that, I'm still exceptional.
(18:53):
And that was the scary part. So I think just
the accomplishment of graduating high school was something amazing for me,
just because at so many points in my high school
career people didn't necessarily want that to be something that
happened for me. And I know a lot of other
people with your diseases have that same experience of people
thinking that your only thing that you should be doing
is surviving and that you shouldn't be thriving.
Speaker 1 (19:16):
And so I mean, reflecting back now as a recent
college graduate, can you think about what you might have
gained from that experience.
Speaker 3 (19:26):
I will never pass up an opportunity to do something
because I spent so much time at home dreaming about
being able to do so many things. So I'm never
going to take for granted having an opportunity to do anything.
It's gotten me very far in college, internships, and opportunities.
And I will say the second thing is, I'm very
(19:46):
good at advocating for myself. I'm very good at like, no,
this is what I mean, this is what I need,
and this is what I need you to do for me.
Being in that scenario, you have to learn that, Like
my mom can only to the school and meet with
you guys so many times, at some point, I'm going
to have to speak for myself. So I had to
(20:06):
figure out how to do that from the time I
was thirteen to the time I graduated high school.
Speaker 1 (20:12):
And can you talk a little bit more about that.
What was what is advocating for yourself, especially at that age?
What did that look like?
Speaker 3 (20:18):
I think for me, I think it was very putting
my foot down and just saying no to something, or
for the first time in my life, being able to
say I can't do that. And I think when you're
a kid, especially when you're an athlete, I can't. It's
not something you ever say. So having to learn how
to say not only no, but I can't do that,
(20:40):
that's pushing me past my physical limit, and the rippercussions
of doing that is going to be so much worse
than if I do it. So I cannot do that
and I'm saying no. I think that's really been the
most important thing of learning my body and learning when
my body says to stop, and making sure that I
put myself in the position to be able to read
(21:02):
my body well. And I also think it taught me
a certain level of just understanding other people, and that
I came across a lot of people who just didn't
understand what I was going through. And in the beginning
I got mad at people who didn't understand what I
was going through. But as I kind of went through
(21:23):
the experience and I got older, I just realized I
can't get mad at somebody for not understanding experience they've
never had. Then it was hard to make friends for
a while just because you don't want people to be
friends with you, I had a pity you don't want
people to be friends with you because they think you
need help, Like you want people to be friends with
you because they like you or because they enjoy spending
(21:46):
time with you. So it was really difficult for me
to like solidly make friends and have a group of
friends because I was like, are you friends with me
because you want to be? And then that kind of
led to a point in my life where I was
like letting anybody treat me however they wanted, because I
was so happy to have friends again. And so it
(22:06):
took a while for me to be able to be like, no,
you deserve to have friends, whether you're disabled or not,
whether you have this illness or not, and good friends
will treat you well.
Speaker 1 (22:17):
And how did that go once you made that decision?
Speaker 3 (22:20):
It was really hard.
Speaker 2 (22:21):
I cut a lot of people out of my life. Unfortunately.
Speaker 3 (22:24):
I think being a person with a disability has always
made it seem like the person with a disability has
to be the bigger person. And it's taken these last
i want to say, two or three years of college
for me to be like I don't always have to
be the bigger person. I can decide that I don't
want to deal with something and not deal with it right,
And I think it's just it's difficult to frame your
(22:45):
mind like that because there was a time period of
two or three years, right, I just didn't have anyone.
So the friends and people that I do have in
my life I hold on to very tightly and very dearly.
But on the flip side, you have to make sure
that you're keeping people around for the right reason and
that you have the support system. Because when my MG
(23:06):
does flair, my parents are in New Jersey. The only
people I have around me are my friends, so I
need them to help me pull me up by my bootstraps.
I need them to take me to the hospital and
know what medications I have and be able to help
me advocate for myself.
Speaker 2 (23:20):
If I can't.
Speaker 3 (23:21):
And I just had incredible people. My partner was very transparent.
My partner's also disabled, so she understands kind of the
nuance of it all. But more importantly, it's such an
amazing thing to be able to be that kind of
vulnerable with your chosen people, right, like see me fall
(23:43):
or to see me not be able to talk, or
in a hospital bed with a million and one things
attached to me, or in the emergency room with me
when I'm like, hey, I think something's about to go
bad here. And to have those people not turn away
from you, can just embrace you and be there for
you has been a really amazing thing that I've so
(24:05):
grateful to experience.
Speaker 1 (24:09):
Like you said, that's how you know who are your
real people exactly, And when that did happen, I mean,
you had your support, but then you also probably had
to deal with the doctors now in Philadelphia, you know,
without your mom, how did that process go, or standing
up for yourself with the doctors in that different situation.
Speaker 2 (24:28):
At first, it was.
Speaker 3 (24:29):
A little scary because when I had flaars and things
back at home, we always went to the same hospital
that my specialist was at, so I was never scared.
Speaker 2 (24:36):
Of going to the hospital then.
Speaker 3 (24:38):
But now it's a little bit different because now I'm
an adult. I think the biggest part of like understanding
that transition and like being able to be a good
advocate for myself is that I know my own medical
history cover to cover, so that makes it a lot
easier for physicians and doctors to take me seriously because
(24:59):
I I know that everything I'm saying once you pull
up my chart is exact, and just having to be
able to say, like, I've experienced this a million times
for the last ten years.
Speaker 2 (25:09):
I know exactly what this is. That's why I came.
Speaker 1 (25:13):
And how did they react to that? I mean, wow,
to have a young person kind of coming in and
being like, look, let me tell you this is what's
going on.
Speaker 3 (25:20):
Some of them were very taken aback, like very much
taken it back. Some of the nurses did not enjoy
me because I was just very I.
Speaker 2 (25:28):
Know exactly what I need.
Speaker 3 (25:29):
I've been in this situation dozens of times, so I
know exactly what I'm gonna need once I get there.
So like I admittedly get very impatient because I know
what each step is going to be, but I still
have to wait for all the paperwork to catch up
to what's happening. But they're usually quite taken it back
that I'm prepared. I never look scared or anything. And
(25:52):
I think for some of them in the emergence room
because I always go through the emergency room, some of
them have never even heard of MG right, so you
have to learn about it. From me, which I know
is frustrating. So that's part of it, and I think
the other part of it is just I'm going to
say something if you're doing something outside of the normal
(26:12):
route of treatment, like you can't try something here, you
can't delay something here, like I know exactly what's supposed
to happen, and if anything outside of that happens, you're
going to hear from me. And I think that creates
a certain level of stress for them, just because they're like,
I have no wiggle room in this scenario. I was like,
that is absolutely right, you have none.
Speaker 1 (26:34):
And obviously you have, like you said, all that experience,
but you know, based on those experiences though, there are
other bipop people are people from marginalized communities with MG
who might not have that same kind of confidence and
ability to do that and to overcome those disparities that
they are encountering. So what are some of those things
(26:55):
that you would recommend that people in that situation do.
Speaker 3 (27:00):
I think a big part of it is one, I
never go to the hospital by myself. Somebody needs to
be there with me. That's always been super important because
I always have somebody to be able to say, like, yes,
that doctor said that yes they treated you like this,
or yes they did this. It's not just my word
for it. Like I said, another really big thing is
just always knowing my medical history cover to cover and
(27:22):
knowing like when you ask this question, I have an
answer like there's never I don't know because I don't
think there's room four and I don't know.
Speaker 1 (27:31):
So if you could give advice to a young person
with an MG diagnosis who might be listening today, what
would that be.
Speaker 3 (27:38):
I think the first thing I would say is to
take everything and stride. It seems like a very daunting
process to get diagnosed and start the medications and do
all of this stuff, but listen to yourself and listen
to your body. You know what's going on in your
body better than anybody else. Secondly, having a support system
(28:01):
beyond your parents is really important because I love my
parents so much and they were so supportive through this
whole process. But I think a really big part of
what our relationship became during the time was that for
them it was like we were all experiencing MG together,
but for me, I was the only one that actually
(28:21):
had it. I was the only one with the symptoms
and the struggles and the problems. So it's important to
have peers, even if they aren't experiencing what you're experiencing.
They're your age mates and they think like you. They
understand how your brain works and what thought process you're
going through. I think the last thing I would say
is take the time to mourn yourself and then take
(28:46):
the time to learn yourself again. I've always said that
if I could redo my life, I would not remove
MG from my story. Wo I think it's made me
an incredible person. I think it's changed the trajectory of
who I was going to become in the best way.
I think it's made me stronger in so many ways.
(29:09):
I think it's shifted my perspective on so many things.
So I think it's important to know that, no matter
how hard it gets, you are going to come out
on the other side of it better because you spend
so much time learning yourself. So take the time to
learn what you like, what do you want to do?
Who are you with this illness? Who are you without it?
(29:32):
I think it's really really important to embrace MG in
your life and not villainize it and kind of just
take it with you as you move because it's a
chronic illness, You'll have it forever, even if you're not
showing symptoms, it's always going to be there. So I
think it's just really important to kind of just relearn
(29:52):
who you are with MG and become okay with that
person so that you're not somebody who sits in self
hatred because of that part with yourself.
Speaker 1 (30:01):
Wonderful. Thank you so much, Anaya. That's advice that I
think any adult should have, is just to be able
to take that time to know yourself and you know what,
who you were as a young person might not be
the person that you are now, even if you don't
have a rare disease. And so it sounds like you
absolutely have grown from this experience in a way that
(30:23):
makes you who you are, and that's a pretty awesome person.
Speaker 2 (30:27):
Thank you so much.
Speaker 3 (30:28):
I'm really glad to just be able to talk about
it and hopefully have a lot of people resonate with
me in my story and kind of take MG for
what it is and keep pushing forward.
Speaker 1 (30:43):
Anaya's journey has already been filled with so much triumph,
overcoming the obstacles of MG while continuing to grow into
an inspiring young disabled woman from dealing with indecision, from
doctors to learning how to have the strength and courage
to find her place in the world. Anaya is a
shining example of perseverance for many, regardless of age. Navigating
(31:05):
MG is a difficult to confusing time, But from Anaya story,
I know I have learned how important it is to
ask questions and to trust your support system and intuition.
Thanks again to Anya for sharing her story today. Please
join us again next week for a very special episode
of Untold Stories. Untold Stories Life with Mayasthenia Gravis is
(31:28):
produced by iHeartRadio in partnership with Argenics and Closer Look,
and hosted by me Martine Hackett. Our executive producer is
Mali Sosha, our EP of Post production is Matt Stillo,
and our producer is Sierra Kaiser. This episode was edited
by Sierra Spreen and written and produced by Tyree Rush.
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