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