December 3, 2024 • 43 mins
When Sumaira was 24, what seemed like a routine wisdom teeth extraction quickly set off a series of unexpected health issues. Soon after, her vision in her right eye began to fade—a small nuisance she tried to ignore. But as her eyesight continued deteriorating, it became clear this wasn’t a passing problem. Eventually, doctors uncovered a deeper issue, revealing a diagnosis that would change everything she thought she knew about her health.
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Speaker 1 (00:03):
Movie.
Speaker 2 (00:08):
I went from being fine to walked into a wall,
collapsed in my office, lost vision in both of my eyes,
and couldn't feel half of my body. That's when we
all decided, I need to go to the hospital right now.
Speaker 3 (00:22):
It's not something that's outwardly visible, and so they'll end
up often in the emergency room because the symptoms are severe.
Speaker 4 (00:30):
My older sister like asked the doctor is she going
to be okay? And the doctor had no response.
Speaker 2 (00:37):
I felt like I was going to die, and all
I could think about was like, I don't want my
mom to lose another kid.
Speaker 1 (00:52):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:16):
These are their stories. I'm Lauren Brite Pacheco, and this
is symptomatic. Meeting Samira Ahmed, You're immediately struck by her
(01:42):
radiant smile and the passion that fuels it. I did
go down the rabbit hole. Sumyra is a beautiful name,
thank you, but it has a very fitting meaning as
well for you. It translates as a famous woman, a
woman who entertains a successful woman, And so I thought,
(02:03):
how did your parents know to name you Samyra?
Speaker 2 (02:07):
Oh my god, I am shook because my entire thirty
five years of existence, I was sort of under the
impression that Samira stems from the Arabic word samra, which
means brown skin.
Speaker 1 (02:23):
That did come up, But it's a successful, celebrated, famous woman,
a woman who entertains.
Speaker 2 (02:30):
I have the chills.
Speaker 1 (02:32):
I have the chills. So you'll have to check in
with your parents and see if they knew that when
they named you. For people who don't know you, how
would you describe yourself passionate?
Speaker 2 (02:43):
I do think I'm sort of a natural born leader.
I always have been since I was a kid. Advocacy
has always been a part of my life in different forms.
So I believe in community. I'm a very community oriented person.
Described myself as kind of a citizen of the world.
(03:04):
I am so fascinated by cultures, languages, different countries, how
people live, just people in general.
Speaker 1 (03:15):
The youngest of three sisters, Samira, is just sixteen months
younger than her sister Sabrina, and they were raised almost
like twins.
Speaker 4 (03:23):
I think because we're close in age, it was easier
for us to relate more. We dance, We went to
dance school together, we went to singing classes together, Sunday school,
and then you know, we went to the same high school.
So we had a very close relationship in the sense
that we did do a lot together.
Speaker 2 (03:45):
For context, my parents immigrated to the US from a
small country in Asia called Bangladesh and they moved to
New Jersey, which is where I was born and brought up.
And in New Jersey, we were very fortunate to have
a very deep rooted Bengali community. So these were folks
who immigrated to the US like my parents, and their
(04:08):
children were born in the US like myself, and to
keep our culture alive, they developed this community that to
this day is still standing so strong. So part of
that included a dance school, a local dance school, a
singing school.
Speaker 1 (04:26):
This community is where Samaira fell in love with performing, singing, dancing, acting,
all of it inspired by the Bollywood movies she grew
up watching with her family. She dreamed of becoming a star.
She even moved to India during high school to study
performing arts, displaying an adventurous bravery that would soon prove invaluable.
(04:47):
Despite the success of her budding acting career, Samayra decided
to prioritize her education and returned home to attend college.
What is amazing to me is that you had lived
a very international, very full life at such an early age,
and there were no health issues even now looking back
(05:11):
at your childhood, nothing that would have been a red flag.
Speaker 2 (05:16):
No, I was so healthy.
Speaker 1 (05:18):
So then take me to when your symptoms began. You
were working full time living in Boston. When did you
begin to notice something wasn't quite right.
Speaker 2 (05:30):
So I had taken a break from acting when I
went to university and a few years after that, So
this was now the spring of twenty fourteen, when I
was twenty four. I had oral surgery, very standard. I
got four of my impacted wisdom teeth extracted, and then
following the procedure, I had an infection, which obviously was uncomfortable,
(05:54):
but still I didn't really think much of it. I
went to the doctor. They fixed it with dressing, an
antibiotics and all of that stuff. So I was not
so worried about it. But two weeks after that infection,
I randomly lost vision in my right eye and it
started with just like a black, little circle, but then
(06:17):
over the next few days just kept expanding and expanding.
Now the irony in all of this is that I
was working in ophthalmology at the time, Thank God, because
I immediately approached some of the doctors that I worked
with and I said, hey, I can't see out of
my right eye. Immediately They're like, oh, let's check your corneas.
(06:40):
Everything was fine structurally, and then I had something called
a visual field test, and this is where they were
able to see that I had lost about sixty percent
of my vision in my right eye, so my field
of vision just like kind of closed in.
Speaker 1 (06:55):
That must have been terrifying.
Speaker 2 (06:59):
It's so fun, Lauren. I wasn't afraid at all, because
I was like, oh, I have an eye issue. I
work with nine eye doctors, they all are affiliated with Harvard.
I'm gonna be okay, they'll figure this out. So I
wasn't scared at all. In fact, I wasn't taking it
as seriously as maybe I should have. So there was
only so much that they could do in the clinic,
(07:22):
so they sent me to the hospital to get an
MRI because they were like, they think that this might
be something neurologically related.
Speaker 1 (07:30):
So that MRI revealed inflammation. Just explain how they gave
you the results of that MRI.
Speaker 2 (07:39):
Yeah, it's so funny. Fourth of July twenty fourteen, I
show up to mass I in ear with my weekend bag.
I'm like, all right, I'm going to get this MRI
and go to my Fourth of July barbecue. Was so
naive and I thought I was going to be like
in and out, you know, super easy. And what was
supposed to be like a two three hour appointment turned
(08:00):
into fourteen hours in the emergency room, having seen specialist
after specialist, and all of whom are just kind of
scratching their heads wondering why is this young, otherwise healthy
woman rapidly losing vision hour by hour? And when I
came out of the MRI, I was greeted by a
(08:20):
couple of neuroophthalmologists and they said, Samiri, you have lost
vision because you have inflammation on the optic nerve in
your brain. And my initial reaction was no, I don't
because you just cannot process something like that at such
(08:41):
a young age when you're perfectly healthy. Otherwise somebody's telling
you you have inflammation in your brain and you just
don't believe it because at twenty four years old, you
think you're invincible. So I just denied it. I was like, no,
that's not mine. You must be mistaken, and they're like, no, no, no,
here it is.
Speaker 1 (08:59):
Did they throw out ideas as to what could be
causing it.
Speaker 2 (09:03):
So I was admitted right away into adult neurology and
they started loading me up with ivy steroids and I was,
of course complying and all that, but you know, you
have questions. You're like, what is happening? Why am I
getting this? And so basically what was explained to me
during the onset was that I had an adiopathic case
of optic neuritis, which is vision lossduite to inflammation, and
(09:27):
that my vision would return within three months to a year.
They said, don't worry, you're going to be fine. You
do have a sixteen percent chance of developing MS at
some point in your life, but it's such a low percentage.
We're pretty confident you're going to get your vision back
and all will be back to normal. When I got discharged,
they said just take some vitamin D. You're severely vitamin
(09:49):
D deficient. So again, at twenty four, when all the
experts around you are not worried and saying you're going
to be okay, You're like, okay, I'm going to be fine.
And I moved on with my life even with vision loss.
Speaker 1 (10:04):
Believing these troubles would soon pass. So Mayra returned to
her normal routine work, family gatherings, and nights out with
friends until her symptoms quickly resurfaced.
Speaker 2 (10:16):
I turned twenty five just a couple weeks later, and
I maintain to this day I partied like a rock star,
as I should have, because you know, twenty five Golden Year,
and yeah, just a couple no. A week after my
twenty fifth birthday, I lost vision in both of my eyes.
(10:36):
I couldn't feel half of my body. Everything felt like
it was on fire. I was also in some pain,
severe nausea, And instead of staying home like a normal
person would when they're not feeling well, I felt safer
being in my office around all of these doctors. I
(10:56):
didn't want to be at home alone with all of
this happening. I was walking or hobbling to my office
trying to, and luckily it was in a populated area,
and because I couldn't see, I literally walked into a wall,
bumped my forehead and then I collapsed, and I think
(11:18):
I did lose consciousness for a few seconds, but it
was quick because next thing I saw, my boss was like, hello,
are you okay? And then you know, my coworker was
there too, and I was just like, I don't think
I'm okay. And they knew that because they had been
checking in on me almost every few hours. Now, imagine
I work with all of these specialists that are at
(11:39):
Harvard and mass General, and they have all the pedigrees
in the world, and they treat you know, eye problems
all day, every day of so many kinds. This was
the first time that they saw something like this, so
even they were nervous, and seeing the nervousness on my
boss's face, that was when I started to take this seriously.
Speaker 1 (12:00):
Samarra had not yet shared any details with her family
about the first episode or the inflammation on her optic nerve.
She had kept it all to herself. Now, on the
way to the er, she faced the difficult task of
sharing this news with her family, something she had been dreading.
I didn't tell my family the first episode because I
(12:21):
didn't want to startle anyone. No one seemed to think
it was a big deal in the hospital, so I
was like, I'm not going to worry.
Speaker 2 (12:27):
People for no reason. But I was in the ambulance.
I called my family. I said, you guys need to
come to Boston. I think something's very wrong.
Speaker 4 (12:36):
At the time, I was like, very fresh in my career,
and I got the phone call, and it's like a
little daunting to get a phone call, like hey, listen,
like very nonslotly, and then when she got into it,
of course more emotionally. I honestly didn't know the extent
of how detailed of an issue it was. None of
(12:58):
us knew what it was until you get there and
you're there for days on end, and that's when it
becomes more like, Okay, things are getting more real. Some
things out right.
Speaker 2 (13:09):
And within hours everyone was in Boston. This time, I
could tell that the hospital also was taking it seriously,
not that they weren't before, but I think they also
understood that things have evolved, things have progressed. This is
not what we were dealing with the first time, And
so I was taken in right away four hours of
imaging twenty vials of blood. I had my first lumbar puncture,
(13:33):
which was the worst, and I was started on ivy
steroids right away.
Speaker 1 (13:38):
For people who don't understand, can you just explain what
a lumbar puncture is and how it feels.
Speaker 2 (13:45):
Oh, yes, it's when they extract with a giant needle
cerebral spinal fluid from your spine, and it is I mean,
I have chills talking about it now. I've had it
twice in my life. It is one of the most
most traumatic things I've ever experienced in my life.
Speaker 1 (14:04):
So take me to your family, going from no knowledge
that there's a problem to stat it's an emergency. Take
me to the moment they all are surrounding you.
Speaker 2 (14:19):
I was on a lot of medications because of how
much pain I was in, So the first time I
remember seeing them was after my lumbar puncture. I was
in my room. I was definitely on morphine and I
woke up from I guess whatever, maybe a nap or
(14:39):
a medication induced nap, and confused. I could also see
the look of fear on my mom's face, and my
sisters just kind of trying to understand what was going on.
It's so interesting. I never really talk about this, so
if I get worked up, it's because it's sometimes it's
traumatic to think about. But like, I'm the kind of
(15:02):
person that it brings me joy to bring joy to
people's lives, making people smile, making them feel good. This
is my love language and it has been since I
was a kid. I never want to be the person
who is adding stress to somebody's life or making them upset,
or making them angry or cry. And it was so
obvious that my family, after all of what we have
(15:26):
been through separately, was now experiencing another trauma or tragedy
and it was because of me. So I felt really guilty.
Speaker 1 (15:37):
I'm gonna cry. That breaks my heart.
Speaker 2 (15:40):
Yeah I was. I felt bad because.
Speaker 1 (15:45):
I didn't I didn't want to add more stress to
my family's lives.
Speaker 2 (15:49):
We had already been through so much.
Speaker 5 (15:53):
And I was thinking about I had a brother passed
away when he was three weeks old, and he passed
before I was born, but I have like this crazy
connection to him, and all I could think about.
Speaker 2 (16:10):
Was like, I don't want my mom to lose another kid.
Speaker 1 (16:17):
Sabrina, seeing your little sister that way in the hospital.
What were your greatest fears and concerns at the time
and what was being expressed by the family not in
front of Samira.
Speaker 4 (16:31):
I think the unknown, right, like not knowing what this was,
what treatment she needed, the effects of the treatment, how
if it's going to be positive negative? Like you know,
it was all triala and error. I think one of
the things that happened is my older sister like asked
the doctor is she going to be okay? And the
(16:52):
doctor had no response. That's when it was like, okay,
no response is not a good response.
Speaker 1 (17:00):
Within a few weeks, Samaira went from a healthy twenty
four year old enjoying her life to rapidly losing her vision.
Inflammation was spreading through her brain as doctors struggled to
stabilize her. What are the doctors telling you at this moment.
Speaker 2 (17:17):
At that point, it was the first time I had
heard the name of my diagnosis. So they told me
that I was suspected to have neurow my light as optica.
They don't know why it happens. At the time, there
was no approved therapy, so they would have to try
different treatments. They told me that there was no cure
(17:37):
and that it was very rare. And I had two
questions for them as soon as I heard all of this,
which was am I going to die from this? To
which they answered they don't know. And I asked, did
I do something to bring this on to myself? Because
(17:57):
I couldn't make sense why it happened.
Speaker 1 (18:01):
I want to hug you, that's so much. Neuromolitis optica
spectrum disorder or NMSD is an extremely rare disease. However,
doctor Michael Levy and the System Professor of Neurology at
Harvard Medical School and neurologist at Massachusetts General Hospital specializes
(18:25):
in treating it. Now, if you had to, not necessarily
in a nutshell, but in Layman's terms, could you give
me a definition for an MOSD.
Speaker 3 (18:36):
There's an immune response against a self protein called the
aquaporn four. Your immune system is not supposed to react
to it, but in people with NMO it does, and
specifically to the acuporn four protein within the spinal cord
and the optic nerve. And when it attacks the optic
nerves and the spinal cord, it leads to blindness and paralysis.
Speaker 1 (19:01):
As doctor Leevy further explains NMOSD is most commonly found
in women, particularly those of Asian or African ancestry. While
its development is not well understood, genetics are believed to
play a role. Although Samaira tested negative for NMOSD antibodies,
(19:21):
her clinical diagnosis was based on her full symptomatic picture
and medical history, including the severity and frequency of her
flare ups. What are some other common symptoms or maybe
early indicators that that's the progression.
Speaker 3 (19:38):
There are a few early indicators if the immune system
attacks the optic nerve. One of the first signs is
pain with eye movements. It feels like every time you
move your eyes up or down or left or right,
it hurts, and so people just want to look straight
or just keep their eyes closed. And then that evolves
fairly quickly over hours to days into a gray spot
(20:00):
over some part of your vision, usually in one eye,
but sometimes both eyes, and then that evolves to near
complete vision loss over about a week or two. So
that's the typical course for an attack in the optic nerve.
If it attacks the spinal cord, the typical progression is
either weakness in an arm or leg or both, or
(20:21):
numbness in the same distribution, and usually pain. Pain feels
like abanding, wrapping pain around your abdomen. And then it's
also usually associated with bowel and bladder dysfunction retention, so
things don't come out like they should. When I first
started working in this space, the average time from onset
(20:42):
to diagnosis was over three years. Now it's under nine months.
Speaker 1 (20:47):
Wow, So it's.
Speaker 3 (20:48):
Not great now, but I would say we've made a
lot of progress because we have a blood test.
Speaker 1 (20:54):
How do you support your patience in managing the anxiety
and the depression and the fear that must come with
receiving the diagnosis.
Speaker 3 (21:06):
Well, I'm always honest with people. I tell them that
in my clinic, twenty three percent of people are in wheelchairs,
sixty percent are blind in at least one eye, who
have the alkal porn four antibody. They are I can't
lie to them and say, oh, it'll be okay. And
it used to be that thirty percent of our patient
population would die of NMO within five years. That's no
(21:28):
longer the case. The mortality has plummeted from thirty percent
to nine percent. Room to improve, for sure, but I
start with those grim figures but then I tell them
the good news about NMO, because there is one piece
of good news about NMO, which is that if we
start treatment and we can prevent future attacks, then they'll
(21:49):
never be worse than they are today, really, because there's
no degenerative disease process going on in the background, nothing
like that. All of the disability is mediated by attacks.
So if we could prevent attacks, we can prevent all
future problems.
Speaker 1 (22:08):
Samaira was blindsided by all of this, but her immediate
concern was the inflammation in her brain. Put on a
regimen of treatments to contain it, she now faced the
psychological toll as a new part of the balancing act.
Speaker 2 (22:23):
When I went home from the hospital, and of course
everything changed. My dreams, my aspirations, my fears were now different.
I was taking medicine now, eighteen pills a day, I
was getting chemotherapy, and uncertain of what my even the
next six months were going to look like. And so
(22:44):
I was in bed rest, just trying to relax and
recover and make sense of all of what had happened.
And I thought to myself, Man, even under these circumstances,
I'm still so lucky. I'm in the United States. I'm
in Massachusetts. I'm in Boston, which is like a medical
(23:08):
mecca in this country in the world.
Speaker 1 (23:11):
So just tell me what your symptoms. Because you get
a diagnosis and you're getting treatment, but that doesn't mean
it's cured or it's gone. How did your symptoms progress.
Speaker 2 (23:23):
The vision was very in and out, kind of dependent
on the day, so I definitely struggled with vision loss
most chronically for the first few years, but also just
like feeling nerve pain and burning sensations in my body
to the point where I felt totally debilitated. And for
(23:44):
someone who is so expressive with their body, it was
really I felt like I was a prisoner in my
own body. I also lost a bit of hearing in
my right ear when all of this happened, so that
sense was also affected. Because of all these medications I
was on, I couldn't taste food the way I wanted
to taste food, so in a way, all of my
(24:06):
senses were affected by this. And to make matters even
more complicated, I don't test positive for the antibody that
is associated with my disease. Thirty percent of us actually
don't test positive, So what that meant for me was Okay,
we've got this like working diagnosis, but let's check you
(24:28):
for everything else, just in case we've missed something. On
top of that, I had relapsed three times in the
first you know, six months, so just like in and
out of hospitals, getting aggressive treatments and interventions, but also
looking for a potential other diagnosis, then becoming sterile from
(24:48):
you know, my medications, and being told at twenty five
that you may never be able to have children. So
if you want to even consider it, freeze your eggs.
Speaker 4 (25:00):
Such a young age, freezing your eggs. It's like, Okay,
we're being smart about this, you know, before the chema,
before any other the drugs, but like it's also like okay, wow,
So again, everything was just so confusing.
Speaker 2 (25:13):
It was just crazy. I mean, I was going through
treatment after treatment for this disease, taking oral medications every day, now,
harvesting my eggs, feeling so uncomfortable in my body, looking
for a diagnosis, relapsing after relapsing.
Speaker 1 (25:30):
You must have been so exhausted, though just emotionally, spiritually, physically,
mentally exhausted from the full time burden of everything you
were feeling.
Speaker 2 (25:44):
Yeah, I was. I basically became a professional patient. I
was exhausted, but I didn't have time to think about
how exhausted I was. I just kept going and going
and going and going. In fact, having free time made
me feel uncomfortable because that's when I had the time
to think about what was going on with me, and
(26:05):
I avoided it like the plague. So I almost made
myself busy on purpose to avoid understanding the gravity of
what was going on Sabrina.
Speaker 1 (26:15):
As her sister, how did you support her in that moment?
Because the initial information and description that comes with a
diagnosis is not good. So I'll be quite frank.
Speaker 4 (26:27):
My whole entire family is very emotional, and I think
that just added more stress to her. So it's more
like being a support system in the things like Okay,
cry it out and go through your thoughts, but at
the same time, you're still here, so you're not in
it alone.
Speaker 1 (26:45):
Since Samaira continued to test negative for MOSD antibodies, the
doctors ran several tests to rule out other potential causes,
including a pet scan to check for cancer. I think the.
Speaker 2 (26:58):
Darkest moment was is in this quest to find out
what was going on with me, there was this idea
that Smyra, you might have cancer actually and as a cancer,
what do you mean? And they were like, no, no, no,
this would actually be one of those situations where you'd
rather have cancer.
Speaker 1 (27:20):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a Medical Mystery Podcast. Somyra's battle
with this elusive disease led to a rapid decline in
(27:41):
her health. She lost over sixty percent of her vision
in both eyes, prompting doctors to discover severe inflammation in
her brain, affecting the optic nerve. Constantly in and out
of the hospital and feeling like a burden to her family,
Samirah carried enormous emotional weight. Though her suspected in MSD,
(28:02):
none of the tests were conclusive. Nearing her breaking point,
she desperately hoped the pet scan would come back positive
for cancer, which would at least provide a clear way forward.
But the results came back negative, sending her right back
to square one.
Speaker 2 (28:31):
And any normal person would be elated by this news
such a relief, But I collapsed in every which way
because I just couldn't believe that this was my life.
Number one, I was praying for cancer that's unheard of.
And number two, I'm now devastated that I don't have
(28:51):
cancer because it means that I'm stuck with this horrible diagnosis.
And I lost it. I totally lost it. That's when
I went to my doctor's and I said, enough is enough.
I have been through this every day, every hour a
week or asleep for the last eight nine months. I
need a break. I can't do this anymore. And so
(29:12):
I planned a trip to all of the places that
make me super happy.
Speaker 1 (29:18):
You know.
Speaker 2 (29:18):
I was like, I'm going to go to Dubai, I'm
going to go to Bombay where I had these amazing
memories from being an actress. I'm going to go to
my country, Bangladesh. And I planned it with the blessings
of my doctor. They were not happy about it, but
they understood that I needed this spiritually, emotionally, psychologically.
Speaker 1 (29:36):
When she came up with the idea to go on
this healing quest, yeah, I was so against it. All right,
take me to what her argument was for it and
your argument against it.
Speaker 4 (29:51):
Her argument was, again it's a healing quest, that it
was the stress of life that was getting to her.
My argument is like God for me happens, what are
you gonna do? And she's like, well, there's doctors out there,
and it's like you have like a specialty doctor that
you need, Like it's doesn't make any sense. But she
bucked it, and then the universe said otherwise.
Speaker 2 (30:12):
The night before I was supposed to leave for my trip,
I was informed that my white blood cell count was
so low because of the chemo that I had been undergoing,
that if I even caught a cold or got something
like diarrhea, like ninety five percent chance I would die.
And so they basically said me going it would be
(30:33):
going against medical advice, and that I needed to sign
all these papers and they were like begging me not
to go, and so I had to cancel my trip.
And on top of that, I had a relapse, so
I was instead of getting on a plane to go
to all these places I wanted to go to, I
was in a hospital getting treatment. And when I came home,
I said, I don't want to live like this anymore.
(30:56):
I don't want to live this kind of life anymore.
Looked into places that did euthanasia around the world, and
before I committed to anything, I thought about my mom
and all the loss that she experienced in her life,
and what this would do to her, what this would
do to my sister and people who looked up to me.
Speaker 1 (31:18):
At that point, desperate for some kind of relief, so
Myra returned to a spiritual healer in Boston for guidance
on navigating the mental toll of her disease.
Speaker 2 (31:31):
And he told me something that was so simple but
stuck with me, and to this day I still remember it.
He told me that sometimes things have to get so
bad before they get better. And I really took that
to heart. And the next day I was crowned Miss Bangladesh,
USA twenty fifteen. Oh my goodness, you can't make this
(31:56):
stuff up if so mental?
Speaker 1 (31:58):
That is incredible. A bit of guidance and then some
well deserved recognition from the virtual competition. That little boost
of optimism and clarity reignited Samayra's motivation to continue searching
for answers. After testing negative for cancer, she embraced her
clinical diagnosis of the NMOSD and realized she needed to
(32:21):
assemble a team of doctors to help her manage symptoms,
including one of the foremost nmost experts in the country,
doctor Leevy. Do you remember meeting her initially and where
she was in terms of her health path.
Speaker 3 (32:38):
I met her at a visit when I came to
Boston for what's called the Patient Day, which is where
we host fifteen twenty twenty five people in a small
room with just a few speakers on a weekend, just
to get everybody in the same room, get them networking,
talking to each other. We give a few lectures, but
really the point is to get everyone talking to each other.
Speaker 2 (33:00):
He was invited as sort of the guest speaker from Hopkins.
He was at Hopkins at the time, and of course
I was starstruck. I mean, this is one of the
guys in nmost He had done so much in the
way of research and clinical care and even support. I
(33:20):
met him and I just hugged him. All I said
was thank you, thank you, thank you, thank you for
caring so much about these diseases. He was a hero
to me, to all of us. I can speak on
behalf of every patient in our community, animost and Mogat.
Doctor Levy is our hero.
Speaker 3 (33:42):
When people introduce themselves as Sarah negative and mo there's
always a little tinge of my doctor doesn't know exactly
what's going on. But now I'm in this tent. I'm
under this tent because I have NMO, and although I
didn't test positive for it, I have nowhere else to go.
And you guys are going to help me figure this out.
And that's how she presented herself.
Speaker 2 (34:02):
As symptoms would arise and they'd be like, Okay, let's
find somebody who knows how to treat this. And over
time I had a team of quite a few specialists,
especially in the beginning years, you know, so that looked
like neurologists, neuroophthalmologists, urologists, guynecologists like an IVF, fertility specialist, rheumatology,
(34:25):
physical therapy, and last but certainly not least, a psychiatrist.
I had to prioritize my mental health.
Speaker 1 (34:34):
Finally, with a supportive team of specialists, Samira began testing
various immunosuppressive therapies and started biannual maintenance psytoscopies to address
her ongoing bladder issues. Though the process was arduous due
to the rarity of her disease, the holistic care eventually
paid off. Over the next few years. Her eyesight returned,
(34:56):
and her flare ups and hospitalizations became less frequent and
less severe, She had more energy to restore normalcy and
dedicate time to her foundation, which she started during the
onset of her NMOSD symptoms.
Speaker 2 (35:12):
The Samaira Foundation, also known as TSF, is now ten
years old. We are a global organization, nonprofit organization dedicated
to raising awareness of NMOSD, which is the disease I have, MOGAD,
which is an adjacent disease, and other rare neuroimmune conditions.
We're super passionate about building communities of support. We fund
(35:36):
research fellowships, journal publications, and of course advocate on behalf
of patients. My favorite part about our organization is that
diversity is a big part of us. It's a superpower
for us. We are truly patient led, patient powered, science driven,
(35:59):
therapy agnostic, and really just trying to do things differently.
Speaker 1 (36:05):
So ten years in, what is your life like? Beautiful?
Speaker 2 (36:10):
It's so bright, it's so colorful, it's so amazing. I
feel like the luckiest person in the entire world. I
can't believe this is my life sometimes, and it's so
interesting because people who have known me forever and ever
and ever will say, look, Samaira, you got the life
that you ultimately wanted. You know, you get to wear
(36:31):
beautiful clothes, travel the world, make people happy, have a platform.
Speaker 4 (36:38):
I think every successful event that she does where it
includes patients is great. It's overwhelmingly nice to see because
these patients look to her as like she sees us.
Right like how you said doctor Leevy made her feel seen,
That's how she makes others feel seen who have.
Speaker 1 (36:59):
This is You've changed so many lives because when I
think of you at the age of twenty five being
told you better hope it's cancer, because cancer has the
research and the funding, there's the attention on it, so
it's better than this incredibly rare condition. But you've altered that.
(37:20):
How much to date have you raised for research?
Speaker 2 (37:23):
In the last ten years, we've raised about five million dollars.
A million has gone directly towards research, and a lot
of the other funds have gone towards organizing patient days.
We've done these now in three different countries, twelve different cities,
also different patient programming. I'm very passionate about knowledge being
(37:46):
a source of power for patients and it being an
empowerment tool. So we invest a lot in patient education, webinars, podcasts,
patient stories.
Speaker 1 (37:59):
So yeah, while NMOSD can often be devastating for patients.
The work Samaira is leading with the Foundation, along with
the ongoing research worldwide, gives doctor Levy optimism about future
outcomes for the condition. If you were to wave a
(38:19):
magic wand and you had unlimited funds, where would you
put them right now? In terms of research and why?
Speaker 3 (38:26):
I think the most exciting air of research now is
to try to I don't want to put too much
emphasis on the C word cure, but I really do
believe that we're at the point scientifically that we can
think about how to turn the immune system off to
this one protein acuporn four. When the disease started, the
(38:48):
immune system turned on and was told that akalporn four
is bad. And now we have a lot more technology
and understanding of how that process started that we're able
to in mouse models turn that immune reaction off.
Speaker 2 (39:03):
Just to aquaborne for wow.
Speaker 3 (39:06):
So I think that that's the most exciting area of research.
That's where I would put my money because you can
imagine a patient comes in right now, I tell them, yes,
we have great drugs, but you have to be on
them for life. We have to suppress your immune system
to some degree or another for the rest of your life.
But if I could tell them, look, we know what
turned your immune system on, and now we have this
treatment that's just going to turn it right off again,
(39:28):
and then you don't need to take immune suppressant medications
for the rest of your life, that would be really cool.
Speaker 1 (39:35):
Are you cautiously optimistic that the C word cure is
on the horizon within your lifetime?
Speaker 3 (39:44):
Within my lifetime? Yes, I wouldn't make promises about five
even ten years, but I think in the future, yes,
it's going to be a real thing.
Speaker 1 (39:54):
And what would you hope people take away from Samira's story.
Speaker 4 (39:59):
I think that it's a good story in the sense
that it has its trials and tribulation, right, everything was
not peachy and perfect, and that she still pushed through,
both personally and professionally to get to a place where
there's inclusivity and openness about understanding not just her rare disease,
(40:22):
but there are so many other rare illnesses and conditions
that haven't been spoken about.
Speaker 1 (40:27):
So it just.
Speaker 4 (40:28):
Allowed them to break open a door for people who
thought they were lost and had no way of connecting
and give them that platform.
Speaker 2 (40:39):
You really never know how life is going to turn out,
and so just keep going, keep going even when times
are so hard, because the other side may be completely different,
of course, but it could be so much better than
what you imagined or what you wanted for yourself. And
I say this at every I organize that, truly we
(41:03):
cannot let our diseases and our diagnoses define us, or
consume us or limit us. There's so many other aspects
to our lives than the diseases that were afflicted with,
and dreams and aspirations may change, but they may actually
end up being far greater. Lean in on your community,
(41:25):
lean in on those who love you and who you love.
You're never burdening people. I had to learn that for myself.
It took so long for me to learn that. But
we have to go through things together. This life is
too crazy to deal with these things alone.
Speaker 1 (41:42):
If you want to learn more about NMOSD, you can
visit the Samaira Foundation website at Samyra Foundation dot org.
And if you know someone who might benefit from the
information in this episode, we encourage you to please share it.
Speaker 2 (41:57):
My name is Samayrah Ahmed. I am the founder and
executive director of the Samaira Foundation, and over the last
ten years, I have been living with a rare autoimmune
disease called neuromylitis optica spectrum disorder, also known as NMOSD.
Speaker 1 (42:17):
On next week's episode of Symptomatic, tune in for a
brand new episode of Symptomatic house calls. This time, we're
checking in with Lauren from case number sixteen. If you
haven't listened to this episode, we highly recommend you do so. Prior,
Lauren began experiencing severe pain that could not be explained
away by her professional dancing career. Her body was slowly
(42:40):
betraying her. The movements that were once effortless soon became
nearly impossible. After fifteen years of searching for relief, Lauren
was finally diagnosed with soriatic arthritis. Join us as we
check in with Lauren, looking back at everything she sacrificed
on her way to re establishing her life and gaining
(43:00):
back control. As always, we would love to hear from you.
Send us your thoughts on this episode, or share a
medical mystery of your own at Symptomatic at iHeartMedia dot com,
and please rate and review Symptomatic wherever you get your podcasts.
We'll see you next time Until then, Be Well Symptomatic
(43:22):
is a production of Ruby Studio from iHeartMedia. Our show
is hosted by me Lauren Bret Pacheco. Executive producers are
Matt Romano and myself. Our EP of Post Production is
James Foster. Our Supervising Producer is Cierra Kaiser. Our writers
are John Irwin and Diana Davis, and our editor is
Cierra Spreen
Movie.
Speaker 2 (00:08):
I went from being fine to walked into a wall,
collapsed in my office, lost vision in both of my eyes,
and couldn't feel half of my body. That's when we
all decided, I need to go to the hospital right now.
Speaker 3 (00:22):
It's not something that's outwardly visible, and so they'll end
up often in the emergency room because the symptoms are severe.
Speaker 4 (00:30):
My older sister like asked the doctor is she going
to be okay? And the doctor had no response.
Speaker 2 (00:37):
I felt like I was going to die, and all
I could think about was like, I don't want my
mom to lose another kid.
Speaker 1 (00:52):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:16):
These are their stories. I'm Lauren Brite Pacheco, and this
is symptomatic. Meeting Samira Ahmed, You're immediately struck by her
(01:42):
radiant smile and the passion that fuels it. I did
go down the rabbit hole. Sumyra is a beautiful name,
thank you, but it has a very fitting meaning as
well for you. It translates as a famous woman, a
woman who entertains a successful woman, And so I thought,
(02:03):
how did your parents know to name you Samyra?
Speaker 2 (02:07):
Oh my god, I am shook because my entire thirty
five years of existence, I was sort of under the
impression that Samira stems from the Arabic word samra, which
means brown skin.
Speaker 1 (02:23):
That did come up, But it's a successful, celebrated, famous woman,
a woman who entertains.
Speaker 2 (02:30):
I have the chills.
Speaker 1 (02:32):
I have the chills. So you'll have to check in
with your parents and see if they knew that when
they named you. For people who don't know you, how
would you describe yourself passionate?
Speaker 2 (02:43):
I do think I'm sort of a natural born leader.
I always have been since I was a kid. Advocacy
has always been a part of my life in different forms.
So I believe in community. I'm a very community oriented person.
Described myself as kind of a citizen of the world.
(03:04):
I am so fascinated by cultures, languages, different countries, how
people live, just people in general.
Speaker 1 (03:15):
The youngest of three sisters, Samira, is just sixteen months
younger than her sister Sabrina, and they were raised almost
like twins.
Speaker 4 (03:23):
I think because we're close in age, it was easier
for us to relate more. We dance, We went to
dance school together, we went to singing classes together, Sunday school,
and then you know, we went to the same high school.
So we had a very close relationship in the sense
that we did do a lot together.
Speaker 2 (03:45):
For context, my parents immigrated to the US from a
small country in Asia called Bangladesh and they moved to
New Jersey, which is where I was born and brought up.
And in New Jersey, we were very fortunate to have
a very deep rooted Bengali community. So these were folks
who immigrated to the US like my parents, and their
(04:08):
children were born in the US like myself, and to
keep our culture alive, they developed this community that to
this day is still standing so strong. So part of
that included a dance school, a local dance school, a
singing school.
Speaker 1 (04:26):
This community is where Samaira fell in love with performing, singing, dancing, acting,
all of it inspired by the Bollywood movies she grew
up watching with her family. She dreamed of becoming a star.
She even moved to India during high school to study
performing arts, displaying an adventurous bravery that would soon prove invaluable.
(04:47):
Despite the success of her budding acting career, Samayra decided
to prioritize her education and returned home to attend college.
What is amazing to me is that you had lived
a very international, very full life at such an early age,
and there were no health issues even now looking back
(05:11):
at your childhood, nothing that would have been a red flag.
Speaker 2 (05:16):
No, I was so healthy.
Speaker 1 (05:18):
So then take me to when your symptoms began. You
were working full time living in Boston. When did you
begin to notice something wasn't quite right.
Speaker 2 (05:30):
So I had taken a break from acting when I
went to university and a few years after that, So
this was now the spring of twenty fourteen, when I
was twenty four. I had oral surgery, very standard. I
got four of my impacted wisdom teeth extracted, and then
following the procedure, I had an infection, which obviously was uncomfortable,
(05:54):
but still I didn't really think much of it. I
went to the doctor. They fixed it with dressing, an
antibiotics and all of that stuff. So I was not
so worried about it. But two weeks after that infection,
I randomly lost vision in my right eye and it
started with just like a black, little circle, but then
(06:17):
over the next few days just kept expanding and expanding.
Now the irony in all of this is that I
was working in ophthalmology at the time, Thank God, because
I immediately approached some of the doctors that I worked
with and I said, hey, I can't see out of
my right eye. Immediately They're like, oh, let's check your corneas.
(06:40):
Everything was fine structurally, and then I had something called
a visual field test, and this is where they were
able to see that I had lost about sixty percent
of my vision in my right eye, so my field
of vision just like kind of closed in.
Speaker 1 (06:55):
That must have been terrifying.
Speaker 2 (06:59):
It's so fun, Lauren. I wasn't afraid at all, because
I was like, oh, I have an eye issue. I
work with nine eye doctors, they all are affiliated with Harvard.
I'm gonna be okay, they'll figure this out. So I
wasn't scared at all. In fact, I wasn't taking it
as seriously as maybe I should have. So there was
only so much that they could do in the clinic,
(07:22):
so they sent me to the hospital to get an
MRI because they were like, they think that this might
be something neurologically related.
Speaker 1 (07:30):
So that MRI revealed inflammation. Just explain how they gave
you the results of that MRI.
Speaker 2 (07:39):
Yeah, it's so funny. Fourth of July twenty fourteen, I
show up to mass I in ear with my weekend bag.
I'm like, all right, I'm going to get this MRI
and go to my Fourth of July barbecue. Was so
naive and I thought I was going to be like
in and out, you know, super easy. And what was
supposed to be like a two three hour appointment turned
(08:00):
into fourteen hours in the emergency room, having seen specialist
after specialist, and all of whom are just kind of
scratching their heads wondering why is this young, otherwise healthy
woman rapidly losing vision hour by hour? And when I
came out of the MRI, I was greeted by a
(08:20):
couple of neuroophthalmologists and they said, Samiri, you have lost
vision because you have inflammation on the optic nerve in
your brain. And my initial reaction was no, I don't
because you just cannot process something like that at such
(08:41):
a young age when you're perfectly healthy. Otherwise somebody's telling
you you have inflammation in your brain and you just
don't believe it because at twenty four years old, you
think you're invincible. So I just denied it. I was like, no,
that's not mine. You must be mistaken, and they're like, no, no, no,
here it is.
Speaker 1 (08:59):
Did they throw out ideas as to what could be
causing it.
Speaker 2 (09:03):
So I was admitted right away into adult neurology and
they started loading me up with ivy steroids and I was,
of course complying and all that, but you know, you
have questions. You're like, what is happening? Why am I
getting this? And so basically what was explained to me
during the onset was that I had an adiopathic case
of optic neuritis, which is vision lossduite to inflammation, and
(09:27):
that my vision would return within three months to a year.
They said, don't worry, you're going to be fine. You
do have a sixteen percent chance of developing MS at
some point in your life, but it's such a low percentage.
We're pretty confident you're going to get your vision back
and all will be back to normal. When I got discharged,
they said just take some vitamin D. You're severely vitamin
(09:49):
D deficient. So again, at twenty four, when all the
experts around you are not worried and saying you're going
to be okay, You're like, okay, I'm going to be fine.
And I moved on with my life even with vision loss.
Speaker 1 (10:04):
Believing these troubles would soon pass. So Mayra returned to
her normal routine work, family gatherings, and nights out with
friends until her symptoms quickly resurfaced.
Speaker 2 (10:16):
I turned twenty five just a couple weeks later, and
I maintain to this day I partied like a rock star,
as I should have, because you know, twenty five Golden Year,
and yeah, just a couple no. A week after my
twenty fifth birthday, I lost vision in both of my eyes.
(10:36):
I couldn't feel half of my body. Everything felt like
it was on fire. I was also in some pain,
severe nausea, And instead of staying home like a normal
person would when they're not feeling well, I felt safer
being in my office around all of these doctors. I
(10:56):
didn't want to be at home alone with all of
this happening. I was walking or hobbling to my office
trying to, and luckily it was in a populated area,
and because I couldn't see, I literally walked into a wall,
bumped my forehead and then I collapsed, and I think
(11:18):
I did lose consciousness for a few seconds, but it
was quick because next thing I saw, my boss was like, hello,
are you okay? And then you know, my coworker was
there too, and I was just like, I don't think
I'm okay. And they knew that because they had been
checking in on me almost every few hours. Now, imagine
I work with all of these specialists that are at
(11:39):
Harvard and mass General, and they have all the pedigrees
in the world, and they treat you know, eye problems
all day, every day of so many kinds. This was
the first time that they saw something like this, so
even they were nervous, and seeing the nervousness on my
boss's face, that was when I started to take this seriously.
Speaker 1 (12:00):
Samarra had not yet shared any details with her family
about the first episode or the inflammation on her optic nerve.
She had kept it all to herself. Now, on the
way to the er, she faced the difficult task of
sharing this news with her family, something she had been dreading.
I didn't tell my family the first episode because I
(12:21):
didn't want to startle anyone. No one seemed to think
it was a big deal in the hospital, so I
was like, I'm not going to worry.
Speaker 2 (12:27):
People for no reason. But I was in the ambulance.
I called my family. I said, you guys need to
come to Boston. I think something's very wrong.
Speaker 4 (12:36):
At the time, I was like, very fresh in my career,
and I got the phone call, and it's like a
little daunting to get a phone call, like hey, listen,
like very nonslotly, and then when she got into it,
of course more emotionally. I honestly didn't know the extent
of how detailed of an issue it was. None of
(12:58):
us knew what it was until you get there and
you're there for days on end, and that's when it
becomes more like, Okay, things are getting more real. Some
things out right.
Speaker 2 (13:09):
And within hours everyone was in Boston. This time, I
could tell that the hospital also was taking it seriously,
not that they weren't before, but I think they also
understood that things have evolved, things have progressed. This is
not what we were dealing with the first time, And
so I was taken in right away four hours of
imaging twenty vials of blood. I had my first lumbar puncture,
(13:33):
which was the worst, and I was started on ivy
steroids right away.
Speaker 1 (13:38):
For people who don't understand, can you just explain what
a lumbar puncture is and how it feels.
Speaker 2 (13:45):
Oh, yes, it's when they extract with a giant needle
cerebral spinal fluid from your spine, and it is I mean,
I have chills talking about it now. I've had it
twice in my life. It is one of the most
most traumatic things I've ever experienced in my life.
Speaker 1 (14:04):
So take me to your family, going from no knowledge
that there's a problem to stat it's an emergency. Take
me to the moment they all are surrounding you.
Speaker 2 (14:19):
I was on a lot of medications because of how
much pain I was in, So the first time I
remember seeing them was after my lumbar puncture. I was
in my room. I was definitely on morphine and I
woke up from I guess whatever, maybe a nap or
(14:39):
a medication induced nap, and confused. I could also see
the look of fear on my mom's face, and my
sisters just kind of trying to understand what was going on.
It's so interesting. I never really talk about this, so
if I get worked up, it's because it's sometimes it's
traumatic to think about. But like, I'm the kind of
(15:02):
person that it brings me joy to bring joy to
people's lives, making people smile, making them feel good. This
is my love language and it has been since I
was a kid. I never want to be the person
who is adding stress to somebody's life or making them upset,
or making them angry or cry. And it was so
obvious that my family, after all of what we have
(15:26):
been through separately, was now experiencing another trauma or tragedy
and it was because of me. So I felt really guilty.
Speaker 1 (15:37):
I'm gonna cry. That breaks my heart.
Speaker 2 (15:40):
Yeah I was. I felt bad because.
Speaker 1 (15:45):
I didn't I didn't want to add more stress to
my family's lives.
Speaker 2 (15:49):
We had already been through so much.
Speaker 5 (15:53):
And I was thinking about I had a brother passed
away when he was three weeks old, and he passed
before I was born, but I have like this crazy
connection to him, and all I could think about.
Speaker 2 (16:10):
Was like, I don't want my mom to lose another kid.
Speaker 1 (16:17):
Sabrina, seeing your little sister that way in the hospital.
What were your greatest fears and concerns at the time
and what was being expressed by the family not in
front of Samira.
Speaker 4 (16:31):
I think the unknown, right, like not knowing what this was,
what treatment she needed, the effects of the treatment, how
if it's going to be positive negative? Like you know,
it was all triala and error. I think one of
the things that happened is my older sister like asked
the doctor is she going to be okay? And the
(16:52):
doctor had no response. That's when it was like, okay,
no response is not a good response.
Speaker 1 (17:00):
Within a few weeks, Samaira went from a healthy twenty
four year old enjoying her life to rapidly losing her vision.
Inflammation was spreading through her brain as doctors struggled to
stabilize her. What are the doctors telling you at this moment.
Speaker 2 (17:17):
At that point, it was the first time I had
heard the name of my diagnosis. So they told me
that I was suspected to have neurow my light as optica.
They don't know why it happens. At the time, there
was no approved therapy, so they would have to try
different treatments. They told me that there was no cure
(17:37):
and that it was very rare. And I had two
questions for them as soon as I heard all of this,
which was am I going to die from this? To
which they answered they don't know. And I asked, did
I do something to bring this on to myself? Because
(17:57):
I couldn't make sense why it happened.
Speaker 1 (18:01):
I want to hug you, that's so much. Neuromolitis optica
spectrum disorder or NMSD is an extremely rare disease. However,
doctor Michael Levy and the System Professor of Neurology at
Harvard Medical School and neurologist at Massachusetts General Hospital specializes
(18:25):
in treating it. Now, if you had to, not necessarily
in a nutshell, but in Layman's terms, could you give
me a definition for an MOSD.
Speaker 3 (18:36):
There's an immune response against a self protein called the
aquaporn four. Your immune system is not supposed to react
to it, but in people with NMO it does, and
specifically to the acuporn four protein within the spinal cord
and the optic nerve. And when it attacks the optic
nerves and the spinal cord, it leads to blindness and paralysis.
Speaker 1 (19:01):
As doctor Leevy further explains NMOSD is most commonly found
in women, particularly those of Asian or African ancestry. While
its development is not well understood, genetics are believed to
play a role. Although Samaira tested negative for NMOSD antibodies,
(19:21):
her clinical diagnosis was based on her full symptomatic picture
and medical history, including the severity and frequency of her
flare ups. What are some other common symptoms or maybe
early indicators that that's the progression.
Speaker 3 (19:38):
There are a few early indicators if the immune system
attacks the optic nerve. One of the first signs is
pain with eye movements. It feels like every time you
move your eyes up or down or left or right,
it hurts, and so people just want to look straight
or just keep their eyes closed. And then that evolves
fairly quickly over hours to days into a gray spot
(20:00):
over some part of your vision, usually in one eye,
but sometimes both eyes, and then that evolves to near
complete vision loss over about a week or two. So
that's the typical course for an attack in the optic nerve.
If it attacks the spinal cord, the typical progression is
either weakness in an arm or leg or both, or
(20:21):
numbness in the same distribution, and usually pain. Pain feels
like abanding, wrapping pain around your abdomen. And then it's
also usually associated with bowel and bladder dysfunction retention, so
things don't come out like they should. When I first
started working in this space, the average time from onset
(20:42):
to diagnosis was over three years. Now it's under nine months.
Speaker 1 (20:47):
Wow, So it's.
Speaker 3 (20:48):
Not great now, but I would say we've made a
lot of progress because we have a blood test.
Speaker 1 (20:54):
How do you support your patience in managing the anxiety
and the depression and the fear that must come with
receiving the diagnosis.
Speaker 3 (21:06):
Well, I'm always honest with people. I tell them that
in my clinic, twenty three percent of people are in wheelchairs,
sixty percent are blind in at least one eye, who
have the alkal porn four antibody. They are I can't
lie to them and say, oh, it'll be okay. And
it used to be that thirty percent of our patient
population would die of NMO within five years. That's no
(21:28):
longer the case. The mortality has plummeted from thirty percent
to nine percent. Room to improve, for sure, but I
start with those grim figures but then I tell them
the good news about NMO, because there is one piece
of good news about NMO, which is that if we
start treatment and we can prevent future attacks, then they'll
(21:49):
never be worse than they are today, really, because there's
no degenerative disease process going on in the background, nothing
like that. All of the disability is mediated by attacks.
So if we could prevent attacks, we can prevent all
future problems.
Speaker 1 (22:08):
Samaira was blindsided by all of this, but her immediate
concern was the inflammation in her brain. Put on a
regimen of treatments to contain it, she now faced the
psychological toll as a new part of the balancing act.
Speaker 2 (22:23):
When I went home from the hospital, and of course
everything changed. My dreams, my aspirations, my fears were now different.
I was taking medicine now, eighteen pills a day, I
was getting chemotherapy, and uncertain of what my even the
next six months were going to look like. And so
(22:44):
I was in bed rest, just trying to relax and
recover and make sense of all of what had happened.
And I thought to myself, Man, even under these circumstances,
I'm still so lucky. I'm in the United States. I'm
in Massachusetts. I'm in Boston, which is like a medical
(23:08):
mecca in this country in the world.
Speaker 1 (23:11):
So just tell me what your symptoms. Because you get
a diagnosis and you're getting treatment, but that doesn't mean
it's cured or it's gone. How did your symptoms progress.
Speaker 2 (23:23):
The vision was very in and out, kind of dependent
on the day, so I definitely struggled with vision loss
most chronically for the first few years, but also just
like feeling nerve pain and burning sensations in my body
to the point where I felt totally debilitated. And for
(23:44):
someone who is so expressive with their body, it was
really I felt like I was a prisoner in my
own body. I also lost a bit of hearing in
my right ear when all of this happened, so that
sense was also affected. Because of all these medications I
was on, I couldn't taste food the way I wanted
to taste food, so in a way, all of my
(24:06):
senses were affected by this. And to make matters even
more complicated, I don't test positive for the antibody that
is associated with my disease. Thirty percent of us actually
don't test positive, So what that meant for me was Okay,
we've got this like working diagnosis, but let's check you
(24:28):
for everything else, just in case we've missed something. On
top of that, I had relapsed three times in the
first you know, six months, so just like in and
out of hospitals, getting aggressive treatments and interventions, but also
looking for a potential other diagnosis, then becoming sterile from
(24:48):
you know, my medications, and being told at twenty five
that you may never be able to have children. So
if you want to even consider it, freeze your eggs.
Speaker 4 (25:00):
Such a young age, freezing your eggs. It's like, Okay,
we're being smart about this, you know, before the chema,
before any other the drugs, but like it's also like okay, wow,
So again, everything was just so confusing.
Speaker 2 (25:13):
It was just crazy. I mean, I was going through
treatment after treatment for this disease, taking oral medications every day, now,
harvesting my eggs, feeling so uncomfortable in my body, looking
for a diagnosis, relapsing after relapsing.
Speaker 1 (25:30):
You must have been so exhausted, though just emotionally, spiritually, physically,
mentally exhausted from the full time burden of everything you
were feeling.
Speaker 2 (25:44):
Yeah, I was. I basically became a professional patient. I
was exhausted, but I didn't have time to think about
how exhausted I was. I just kept going and going
and going and going. In fact, having free time made
me feel uncomfortable because that's when I had the time
to think about what was going on with me, and
(26:05):
I avoided it like the plague. So I almost made
myself busy on purpose to avoid understanding the gravity of
what was going on Sabrina.
Speaker 1 (26:15):
As her sister, how did you support her in that moment?
Because the initial information and description that comes with a
diagnosis is not good. So I'll be quite frank.
Speaker 4 (26:27):
My whole entire family is very emotional, and I think
that just added more stress to her. So it's more
like being a support system in the things like Okay,
cry it out and go through your thoughts, but at
the same time, you're still here, so you're not in
it alone.
Speaker 1 (26:45):
Since Samaira continued to test negative for MOSD antibodies, the
doctors ran several tests to rule out other potential causes,
including a pet scan to check for cancer. I think the.
Speaker 2 (26:58):
Darkest moment was is in this quest to find out
what was going on with me, there was this idea
that Smyra, you might have cancer actually and as a cancer,
what do you mean? And they were like, no, no, no,
this would actually be one of those situations where you'd
rather have cancer.
Speaker 1 (27:20):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a Medical Mystery Podcast. Somyra's battle
with this elusive disease led to a rapid decline in
(27:41):
her health. She lost over sixty percent of her vision
in both eyes, prompting doctors to discover severe inflammation in
her brain, affecting the optic nerve. Constantly in and out
of the hospital and feeling like a burden to her family,
Samirah carried enormous emotional weight. Though her suspected in MSD,
(28:02):
none of the tests were conclusive. Nearing her breaking point,
she desperately hoped the pet scan would come back positive
for cancer, which would at least provide a clear way forward.
But the results came back negative, sending her right back
to square one.
Speaker 2 (28:31):
And any normal person would be elated by this news
such a relief, But I collapsed in every which way
because I just couldn't believe that this was my life.
Number one, I was praying for cancer that's unheard of.
And number two, I'm now devastated that I don't have
(28:51):
cancer because it means that I'm stuck with this horrible diagnosis.
And I lost it. I totally lost it. That's when
I went to my doctor's and I said, enough is enough.
I have been through this every day, every hour a
week or asleep for the last eight nine months. I
need a break. I can't do this anymore. And so
(29:12):
I planned a trip to all of the places that
make me super happy.
Speaker 1 (29:18):
You know.
Speaker 2 (29:18):
I was like, I'm going to go to Dubai, I'm
going to go to Bombay where I had these amazing
memories from being an actress. I'm going to go to
my country, Bangladesh. And I planned it with the blessings
of my doctor. They were not happy about it, but
they understood that I needed this spiritually, emotionally, psychologically.
Speaker 1 (29:36):
When she came up with the idea to go on
this healing quest, yeah, I was so against it. All right,
take me to what her argument was for it and
your argument against it.
Speaker 4 (29:51):
Her argument was, again it's a healing quest, that it
was the stress of life that was getting to her.
My argument is like God for me happens, what are
you gonna do? And she's like, well, there's doctors out there,
and it's like you have like a specialty doctor that
you need, Like it's doesn't make any sense. But she
bucked it, and then the universe said otherwise.
Speaker 2 (30:12):
The night before I was supposed to leave for my trip,
I was informed that my white blood cell count was
so low because of the chemo that I had been undergoing,
that if I even caught a cold or got something
like diarrhea, like ninety five percent chance I would die.
And so they basically said me going it would be
(30:33):
going against medical advice, and that I needed to sign
all these papers and they were like begging me not
to go, and so I had to cancel my trip.
And on top of that, I had a relapse, so
I was instead of getting on a plane to go
to all these places I wanted to go to, I
was in a hospital getting treatment. And when I came home,
I said, I don't want to live like this anymore.
(30:56):
I don't want to live this kind of life anymore.
Looked into places that did euthanasia around the world, and
before I committed to anything, I thought about my mom
and all the loss that she experienced in her life,
and what this would do to her, what this would
do to my sister and people who looked up to me.
Speaker 1 (31:18):
At that point, desperate for some kind of relief, so
Myra returned to a spiritual healer in Boston for guidance
on navigating the mental toll of her disease.
Speaker 2 (31:31):
And he told me something that was so simple but
stuck with me, and to this day I still remember it.
He told me that sometimes things have to get so
bad before they get better. And I really took that
to heart. And the next day I was crowned Miss Bangladesh,
USA twenty fifteen. Oh my goodness, you can't make this
(31:56):
stuff up if so mental?
Speaker 1 (31:58):
That is incredible. A bit of guidance and then some
well deserved recognition from the virtual competition. That little boost
of optimism and clarity reignited Samayra's motivation to continue searching
for answers. After testing negative for cancer, she embraced her
clinical diagnosis of the NMOSD and realized she needed to
(32:21):
assemble a team of doctors to help her manage symptoms,
including one of the foremost nmost experts in the country,
doctor Leevy. Do you remember meeting her initially and where
she was in terms of her health path.
Speaker 3 (32:38):
I met her at a visit when I came to
Boston for what's called the Patient Day, which is where
we host fifteen twenty twenty five people in a small
room with just a few speakers on a weekend, just
to get everybody in the same room, get them networking,
talking to each other. We give a few lectures, but
really the point is to get everyone talking to each other.
Speaker 2 (33:00):
He was invited as sort of the guest speaker from Hopkins.
He was at Hopkins at the time, and of course
I was starstruck. I mean, this is one of the
guys in nmost He had done so much in the
way of research and clinical care and even support. I
(33:20):
met him and I just hugged him. All I said
was thank you, thank you, thank you, thank you for
caring so much about these diseases. He was a hero
to me, to all of us. I can speak on
behalf of every patient in our community, animost and Mogat.
Doctor Levy is our hero.
Speaker 3 (33:42):
When people introduce themselves as Sarah negative and mo there's
always a little tinge of my doctor doesn't know exactly
what's going on. But now I'm in this tent. I'm
under this tent because I have NMO, and although I
didn't test positive for it, I have nowhere else to go.
And you guys are going to help me figure this out.
And that's how she presented herself.
Speaker 2 (34:02):
As symptoms would arise and they'd be like, Okay, let's
find somebody who knows how to treat this. And over
time I had a team of quite a few specialists,
especially in the beginning years, you know, so that looked
like neurologists, neuroophthalmologists, urologists, guynecologists like an IVF, fertility specialist, rheumatology,
(34:25):
physical therapy, and last but certainly not least, a psychiatrist.
I had to prioritize my mental health.
Speaker 1 (34:34):
Finally, with a supportive team of specialists, Samira began testing
various immunosuppressive therapies and started biannual maintenance psytoscopies to address
her ongoing bladder issues. Though the process was arduous due
to the rarity of her disease, the holistic care eventually
paid off. Over the next few years. Her eyesight returned,
(34:56):
and her flare ups and hospitalizations became less frequent and
less severe, She had more energy to restore normalcy and
dedicate time to her foundation, which she started during the
onset of her NMOSD symptoms.
Speaker 2 (35:12):
The Samaira Foundation, also known as TSF, is now ten
years old. We are a global organization, nonprofit organization dedicated
to raising awareness of NMOSD, which is the disease I have, MOGAD,
which is an adjacent disease, and other rare neuroimmune conditions.
We're super passionate about building communities of support. We fund
(35:36):
research fellowships, journal publications, and of course advocate on behalf
of patients. My favorite part about our organization is that
diversity is a big part of us. It's a superpower
for us. We are truly patient led, patient powered, science driven,
(35:59):
therapy agnostic, and really just trying to do things differently.
Speaker 1 (36:05):
So ten years in, what is your life like? Beautiful?
Speaker 2 (36:10):
It's so bright, it's so colorful, it's so amazing. I
feel like the luckiest person in the entire world. I
can't believe this is my life sometimes, and it's so
interesting because people who have known me forever and ever
and ever will say, look, Samaira, you got the life
that you ultimately wanted. You know, you get to wear
(36:31):
beautiful clothes, travel the world, make people happy, have a platform.
Speaker 4 (36:38):
I think every successful event that she does where it
includes patients is great. It's overwhelmingly nice to see because
these patients look to her as like she sees us.
Right like how you said doctor Leevy made her feel seen,
That's how she makes others feel seen who have.
Speaker 1 (36:59):
This is You've changed so many lives because when I
think of you at the age of twenty five being
told you better hope it's cancer, because cancer has the
research and the funding, there's the attention on it, so
it's better than this incredibly rare condition. But you've altered that.
(37:20):
How much to date have you raised for research?
Speaker 2 (37:23):
In the last ten years, we've raised about five million dollars.
A million has gone directly towards research, and a lot
of the other funds have gone towards organizing patient days.
We've done these now in three different countries, twelve different cities,
also different patient programming. I'm very passionate about knowledge being
(37:46):
a source of power for patients and it being an
empowerment tool. So we invest a lot in patient education, webinars, podcasts,
patient stories.
Speaker 1 (37:59):
So yeah, while NMOSD can often be devastating for patients.
The work Samaira is leading with the Foundation, along with
the ongoing research worldwide, gives doctor Levy optimism about future
outcomes for the condition. If you were to wave a
(38:19):
magic wand and you had unlimited funds, where would you
put them right now? In terms of research and why?
Speaker 3 (38:26):
I think the most exciting air of research now is
to try to I don't want to put too much
emphasis on the C word cure, but I really do
believe that we're at the point scientifically that we can
think about how to turn the immune system off to
this one protein acuporn four. When the disease started, the
(38:48):
immune system turned on and was told that akalporn four
is bad. And now we have a lot more technology
and understanding of how that process started that we're able
to in mouse models turn that immune reaction off.
Speaker 2 (39:03):
Just to aquaborne for wow.
Speaker 3 (39:06):
So I think that that's the most exciting area of research.
That's where I would put my money because you can
imagine a patient comes in right now, I tell them, yes,
we have great drugs, but you have to be on
them for life. We have to suppress your immune system
to some degree or another for the rest of your life.
But if I could tell them, look, we know what
turned your immune system on, and now we have this
treatment that's just going to turn it right off again,
(39:28):
and then you don't need to take immune suppressant medications
for the rest of your life, that would be really cool.
Speaker 1 (39:35):
Are you cautiously optimistic that the C word cure is
on the horizon within your lifetime?
Speaker 3 (39:44):
Within my lifetime? Yes, I wouldn't make promises about five
even ten years, but I think in the future, yes,
it's going to be a real thing.
Speaker 1 (39:54):
And what would you hope people take away from Samira's story.
Speaker 4 (39:59):
I think that it's a good story in the sense
that it has its trials and tribulation, right, everything was
not peachy and perfect, and that she still pushed through,
both personally and professionally to get to a place where
there's inclusivity and openness about understanding not just her rare disease,
(40:22):
but there are so many other rare illnesses and conditions
that haven't been spoken about.
Speaker 1 (40:27):
So it just.
Speaker 4 (40:28):
Allowed them to break open a door for people who
thought they were lost and had no way of connecting
and give them that platform.
Speaker 2 (40:39):
You really never know how life is going to turn out,
and so just keep going, keep going even when times
are so hard, because the other side may be completely different,
of course, but it could be so much better than
what you imagined or what you wanted for yourself. And
I say this at every I organize that, truly we
(41:03):
cannot let our diseases and our diagnoses define us, or
consume us or limit us. There's so many other aspects
to our lives than the diseases that were afflicted with,
and dreams and aspirations may change, but they may actually
end up being far greater. Lean in on your community,
(41:25):
lean in on those who love you and who you love.
You're never burdening people. I had to learn that for myself.
It took so long for me to learn that. But
we have to go through things together. This life is
too crazy to deal with these things alone.
Speaker 1 (41:42):
If you want to learn more about NMOSD, you can
visit the Samaira Foundation website at Samyra Foundation dot org.
And if you know someone who might benefit from the
information in this episode, we encourage you to please share it.
Speaker 2 (41:57):
My name is Samayrah Ahmed. I am the founder and
executive director of the Samaira Foundation, and over the last
ten years, I have been living with a rare autoimmune
disease called neuromylitis optica spectrum disorder, also known as NMOSD.
Speaker 1 (42:17):
On next week's episode of Symptomatic, tune in for a
brand new episode of Symptomatic house calls. This time, we're
checking in with Lauren from case number sixteen. If you
haven't listened to this episode, we highly recommend you do so. Prior,
Lauren began experiencing severe pain that could not be explained
away by her professional dancing career. Her body was slowly
(42:40):
betraying her. The movements that were once effortless soon became
nearly impossible. After fifteen years of searching for relief, Lauren
was finally diagnosed with soriatic arthritis. Join us as we
check in with Lauren, looking back at everything she sacrificed
on her way to re establishing her life and gaining
(43:00):
back control. As always, we would love to hear from you.
Send us your thoughts on this episode, or share a
medical mystery of your own at Symptomatic at iHeartMedia dot com,
and please rate and review Symptomatic wherever you get your podcasts.
We'll see you next time Until then, Be Well Symptomatic
(43:22):
is a production of Ruby Studio from iHeartMedia. Our show
is hosted by me Lauren Bret Pacheco. Executive producers are
Matt Romano and myself. Our EP of Post Production is
James Foster. Our Supervising Producer is Cierra Kaiser. Our writers
are John Irwin and Diana Davis, and our editor is
Cierra Spreen
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