You Might Also Like: Symptomatic: A Medical Mystery Podcast

Summary

Symptomatic: A Medical Mystery Podcast – In-Depth Summary

Introduction

In this compelling episode of Symptomatic: A Medical Mystery Podcast, host Lauren Bright Pacheco delves into the harrowing yet inspiring journey of Samira Ahmed, a young woman diagnosed with the rare autoimmune disease Neuromyelitis Optica Spectrum Disorder (NMOSD). Through an intimate conversation with Samira, her sister Sabrina Ahmed, and insights from Dr. Michael Levy, the episode explores the multifaceted challenges of living with a debilitating illness, the resilience required to overcome them, and the profound impact of community and advocacy.

Samira Ahmed’s Initial Illness and Symptoms

Samira Ahmed’s ordeal began unexpectedly in early 2014 when, at the age of 24, she experienced sudden and severe health setbacks. After undergoing oral surgery to remove impacted wisdom teeth, Samira developed an infection that initially seemed manageable with antibiotics. However, two weeks later, she began to lose vision in her right eye, reporting, “[00:21] Dr. Michael Levy: Right now, it's not something that's outwardly visible, and so they'll end up often in the emergency room because the symptoms are severe.”

Despite working in ophthalmology and consulting with top eye doctors affiliated with Harvard, Samira remained optimistic, believing her condition would be resolved. This confidence was shattered when her vision loss escalated, leading to a rapid decline in her health.

Medical Journey and Diagnosis

Samira's initial diagnosis was idiopathic optic neuritis, with doctors attributing her vision loss to inflammation along the optic nerve. She recounts, “[06:59] I wasn't taking it as seriously as maybe I should have... So they sent me to the hospital to get an MRI because they thought this might be something neurologically related.” The MRI revealed inflammation in her brain, prompting a series of tests and hospitalizations. Despite multiple consultations, it wasn’t until later that NMOSD was suspected.

The journey to diagnosis was fraught with uncertainty and fear. Samira describes her experience during a critical hospital visit: “[08:59] I was admitted right away into adult neurology... They thought it was something neurologically related.” Despite the gravity of her symptoms, the exact cause remained elusive, leading to prolonged periods of treatment and recurring flare-ups.

Family and Emotional Impact

Throughout her illness, Samira maintained a close relationship with her sister, Sabrina, who provided unwavering support. The emotional toll on the family was significant, especially given their history of loss. Samira reflects, “[14:18]... I never really talk about this... I felt really guilty.” The fear of adding more stress to her family was a constant burden, exacerbated by her initial reluctance to share the severity of her condition.

Sabrina shares her perspective, “[16:31] The unknown... it was all trial and error.” The sisters navigated the complexities of Samira’s illness together, balancing emotional support with the practicalities of managing a rare and debilitating disease.

Management and Treatment

Diagnosed with NMOSD, Samira embarked on an intensive treatment regimen to manage her symptoms and prevent further attacks. Dr. Michael Levy explains, “[19:38]... NMOSD is an immune response against a self protein called aquaporin 4.” Although Samira tested negative for the typical NMOSD antibodies, her clinical presentation warranted aggressive treatment.

Samira details the daily challenges: “[23:23]... the vision was very in and out, feeling nerve pain and burning sensations... I felt totally debilitated.” The treatment was not only physically taxing but also mentally exhausting, leading her to become a "professional patient" who continuously fought against the disease’s progression.

Establishing the Samira Foundation

Despite the relentless nature of her illness, Samira channeled her experiences into advocacy and support for others facing similar challenges. She founded the Samira Foundation (TSF), a nonprofit dedicated to raising awareness about NMOSD and related neuroimmune conditions. Samira states, “[36:11]... we're a global organization... dedicated to raising awareness of NMOSD.” Over a decade, the foundation has raised approximately $5 million, funding research, patient education, and community-building initiatives.

The foundation emphasizes diversity and patient-led initiatives, aiming to empower those affected by NMOSD and other rare diseases. Samira reflects on her journey, “[37:08]... I feel like the luckiest person in the entire world. I can't believe this is my life sometimes.”

Insights from Dr. Michael Levy

Dr. Michael Levy, an assistant professor of neurology at Harvard Medical School, offers valuable insights into NMOSD and its treatment. He highlights the progress made in diagnosing and managing the disease: “[20:54]... We've made a lot of progress because we have a blood test.” However, he acknowledges the ongoing challenges, particularly for seronegative patients like Samira.

Dr. Levy is optimistic about future advancements, stating, “[40:05]... I think that's the most exciting area of research. That's where I would put my money... we can think about how to turn the immune system off to this one protein, aquaporin 4.” He envisions a future where targeted treatments could effectively manage or even cure NMOSD, significantly improving patient outcomes.

Conclusion and Takeaways

Samira Ahmed's story is one of resilience, advocacy, and the transformative power of community. From the depths of a mysterious and debilitating illness, she emerged as a beacon of hope and support for others facing similar battles. Her message is clear: “[41:38]... 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.”

The episode underscores the importance of patient-led initiatives, the necessity of continued research, and the profound impact one individual can have in raising awareness and fostering support for rare diseases. Samira’s journey not only highlights the medical challenges of NMOSD but also celebrates the human spirit's ability to overcome adversity and create meaningful change.

Notable Quotes

• Samira Ahmed [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.”

• Lauren Bright Pacheco [02:07]: “Sumaira is a beautiful name... How did your parents know to name you Samira?”

• Samira Ahmed [05:16]: “No, I was so healthy.”

• Sabrina Ahmed [03:23]: “We danced. We went to dance school together. We went to singing classes together...”

• Dr. Michael Levy [19:38]: “If the immune system attacks the optic nerve, one of the first signs is pain with eye movements.”

Further Information

To learn more about NMOSD and support Samira’s ongoing efforts, visit the Samira Foundation website at samirafoundation.org. Sharing this episode can help raise awareness and provide support to those navigating similar medical mysteries.

Transcript

[Samira Ahmed]

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.

[Dr. Michael Levy]

Right now, it's not something that's outwardly visible, and so they'll end up often in the emergency room because the symptoms are severe.

[Sabrina Ahmed]

My older sister, like, asked the doctor, is she gonna be okay? And the doctor had no response.

[Samira Ahmed]

I felt like I was gonna die. And all I could think about was, like, I don't want my mom to lose another kid.

[Lauren Bright Pacheco]

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. These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic Meeting Sumaira Ahmed. You're immediately struck by her radiant smile and the passion that fuels it. I did go down the rabbit hole. Sumaira is a beautiful name.

[Samira Ahmed]

Thank you.

[Lauren Bright Pacheco]

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, how did your parents know to name you Samira?

[Samira Ahmed]

Oh, my God. I am shook because my entire 35 years of existence, I was sort of under the impression that Samira stems from the Arabic word samra, which means brown skin.

[Lauren Bright Pacheco]

That did come up. But it's a successful, celebrated, famous woman, a woman who entertains.

[Samira Ahmed]

I have the chills. I have the chills.

[Lauren Bright Pacheco]

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?

[Samira Ahmed]

Passionate. 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. I would describe myself as kind of a citizen of the world. I am so fascinated by cultures, languages, different countries, how people live, just people in general.

[Lauren Bright Pacheco]

The youngest of three sisters, Samira is just 16 months younger than her sister Sabrina. And they were raised almost like twins.

[Sabrina Ahmed]

I think because we're close in age, it was easier for us to relate more. We danced. 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.

[Samira Ahmed]

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. And in New Jersey, we were very fortunate to have a very deep rooted Bengali community. So these were folks who immigrated to the U.S. like my parents, and their 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.

[Lauren Bright Pacheco]

This community is where Samira 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. Despite the success of her budding acting career, Samira 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 at your childhood, nothing that would have been a red flag.

[Samira Ahmed]

No, I was so healthy.

[Lauren Bright Pacheco]

So then take me to when your symptoms began. You were working full time, living in Boston. When did you begin to know, notice something wasn't quite right?

[Samira Ahmed]

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 2014, when I was 24. 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, but still, I didn't really think much of it. I went to the doctor, they fixed it with drug and 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 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. 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 60% of my vision in my right eye. So my Field of vision just kind of closed in.

[Lauren Bright Pacheco]

That must have been terrifying.

[Samira Ahmed]

It's so funny, 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 going to 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. So they sent me to the hospital to get an mri because they were like, they think that this might be something neurologically related.

[Lauren Bright Pacheco]

So that MRI revealed inflammation. Just explain how they gave you the results of that MRI.

[Samira Ahmed]

Yeah, it's so funny. Fourth of July, 2014, I show up to Mass Eye and 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. 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 into 14 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 couple of neuro ophthalmologists, and they said, sumira, 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 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 24 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.

[Lauren Bright Pacheco]

Did they throw out ideas as to what could be causing it?

[Samira Ahmed]

So I was admitted right away into adult neurology, and they started loading me up with IV 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 idiopathic case of optic neuritis, which is vision loss due to inflammation, and 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 16% 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 D deficient. So again, at 24, 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.

[Lauren Bright Pacheco]

Believing these troubles would soon pass, Samira returned to her normal routine. Work, family gatherings, and nights out with friends until her symptoms quickly resurfaced.

[Samira Ahmed]

I turned 25 just a couple weeks later, and I maintain to this day I partied like a rock star, as I should have, because, you know, 25 golden year, and, yeah, just a couple. No. A week after my 25th birthday, I lost vision in both of my eyes. 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 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 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 co worker 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 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 that was when I started to take this seriously.

[Lauren Bright Pacheco]

Samira 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.

[Samira Ahmed]

I didn't tell my family the first episode because I 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 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.

[Sabrina Ahmed]

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 nonchalantly. 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 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. Something's not right.

[Samira Ahmed]

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, 20 vials of blood. I had my first lumbar puncture, which was the worst. And I was started on IV steroids right away.

[Lauren Bright Pacheco]

For people who don't understand, can you just explain what a lumbar puncture is and how it feels?

[Dr. Michael Levy]

Oh, yes.

[Samira Ahmed]

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 traumatic things I've ever experienced in my life.

[Lauren Bright Pacheco]

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.

[Samira Ahmed]

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 a medication induced nap, and confused. I could also see the look of fear on my mom's face and my sister's 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 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 been through separately, was now experiencing another trauma or tragedy and it was because of me. So I felt really guilty.

[Lauren Bright Pacheco]

Cry. That breaks my heart.

[Samira Ahmed]

Yeah, I was, I felt bad because.

[Lauren Bright Pacheco]

I didn't, I didn't want to add more stress to my family's lives.

[Samira Ahmed]

We had already been through so much and I was thinking about, I had a brother who 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 was like, I don't want my mom to lose another kid.

[Lauren Bright Pacheco]

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?

[Sabrina Ahmed]

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 trial 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 doctor had no response. That's when it was like, okay, no response is not a good response.

[Lauren Bright Pacheco]

Within a few weeks, Samira went From a healthy 24 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?

[Samira Ahmed]

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 neuromyelitis 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 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 onto myself? Because I couldn't make sense of why it happened.

[Lauren Bright Pacheco]

I want to hug you. That's so much. Neuromyelitis optica Spectrum disorder, or NMOSD, is an extremely rare disease. However, Dr. Michael Levy, an assistant professor of neurology at Harvard Medical School and neurologist at Massachusetts General Hospital, specializes in treating it. Now, if you had to, not necessarily in a nutshell, but in layman's terms, could you give me a definition?

[Dr. Michael Levy]

For NMOSD, there's an immune response against a self protein called aquaporin 4. Your immune system is not supposed to react to it, but in people with NMO, it does, and specifically to the Aquaporin 4 protein within the spinal cord and the optic nerve. And when it attacks the optic nerves in the spinal cord, it leads to blindness and paralysis.

[Lauren Bright Pacheco]

As Dr. Levy 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 Sumira tested negative for NMOSD antibodies, 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?

[Dr. Michael Levy]

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 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 a leg or both, or numbness in the same distribution. And usually pain. Pain feels like a banding 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 to diagnosis was over three years. Now it's under nine months.

[Lauren Bright Pacheco]

Wow.

[Dr. Michael Levy]

So it's not great now, but I would say we've made a lot of progress because we have a blood test.

[Lauren Bright Pacheco]

How do you support your patients in managing the anxiety and the depression and the fear that must come with receiving the diagnosis?

[Dr. Michael Levy]

Well, I'm always honest with people. I tell them that in my clinic, 23% of people are in wheelchairs, 60% are blind in at least one eye who have the Aquaporin 4 antibody. They are. I can't lie to them and say, oh, it'll be okay. And it used to be that 30% of our patient population would die of NMO within five years. That's no longer the case. The mortality has plummeted from 30% to 9%. 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 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.

[Lauren Bright Pacheco]

Samira 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.

[Samira Ahmed]

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, 18 pills a day. I was getting chemotherapy and, you know, uncertain of what my. Even the next six months were going to look like. And so 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 mecca in this country, in the world.

[Lauren Bright Pacheco]

So just tell me what your symptoms cause. 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?

[Samira Ahmed]

The vision was very in and out, kind of dependent on the day. So I definitely struggled with vision loss almost 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 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 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. 30% 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 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, you know, my medications and being told at 25 that you may never be able to have children. So if you want to even consider it, freeze your eggs.

[Sabrina Ahmed]

At such a young age, freezing your eggs, it's like, okay, we're being smart about this, you know, before the chemo, before the. Any other. The drugs. But like, it's also like, okay, wow. So again, everything was just so confusing.

[Samira Ahmed]

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.

[Lauren Bright Pacheco]

You must have been so exhausted, though. Just emotionally, spiritually, physically, mentally exhausted from the full time burden of everything you were feeling.

[Samira Ahmed]

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 I avoided it like the plague. So I almost made myself busy on purpose to avoid understanding the gravity of what was going on.

[Lauren Bright Pacheco]

Sabrina, 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.

[Sabrina Ahmed]

So I'll be quite frank. 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 sense, like, okay, cry it out and go through your thoughts, but at the same time, you are still here, so you're not in it alone.

[Lauren Bright Pacheco]

Since Samira continued to test negative for NMOSD antibodies, the doctors ran several tests to rule out other potential causes, including a PET scan to check for cancer.

[Samira Ahmed]

I think the darkest moment was in this quest to find out what was going on with me. There was this idea that smyra, you might have cancer, actually. And I was like, cancer, 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.

[Lauren Bright Pacheco]

We'll be right back with Symptomatic A Medical Mystery podcast.

[Samira Ahmed]

Join me, Dr. Panico, with Cyndi Lauper and chef Michelle Bernstein to talk about plaque psoriasis and psoriatic arthritis. The potential connection and risk of developing permanent joint damage.

[Dr. Panico]

Cosentyx Secukinumab is prescribed for adults with moderate to severe plaque psoriasis 300mg dose and adults with active psoriatic arthritis 150mg dose. Don't use if you're allergic to Cosentyx before starting, get checked for tuberculosis. An increased risk of infections and lowered ability to fight them may occur. Like tuberculosis or other serious bacterial, fungal or viral infections, some are fatal. Tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches or coughs had a vaccine or planned to or if inflammatory bowel disease symptoms develop or worsen, serious allergic reactions and severe eczema like skin reactions may occur. Learn more at 1844cosentyx or cosentyx.com Cindy.

[Lauren Bright Pacheco]

Now back to Symptomatic A Medical Mystery Podcast Samira's battle with this elusive disease led to a rapid decline in her health. She lost over 60% 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, Samira carried enormous emotional weight. Though her doctor suspected nmosd, 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.

[Samira Ahmed]

And any normal person would be elated by this news. It's 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 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 doctors and I said, enough is enough. I have been through this every day, every hour, awake or asleep, for the last eight, nine months. I need a break. I can't do this anymore. And so I planned a trip to all of the places that make me super happy. You know, 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 when she came up with.

[Lauren Bright Pacheco]

The idea to go on this healing quest.

[Sabrina Ahmed]

Yeah. I was so against it.

[Lauren Bright Pacheco]

All right, take me to what her argument was for it and your argument against it.

[Sabrina Ahmed]

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 forbid anything happens, what are you gonna do? And she's like, well, there's doctors out there, but it's like, you have, like, a specialty doctor that you need. Like, it doesn't make any sense. But she booked it, and then the universe said otherwise.

[Samira Ahmed]

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 95% chance I would die. And so they basically said me going would be 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. I don't want to live this kind of life anymore. I 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 at that point.

[Lauren Bright Pacheco]

Desperate for some kind of relief, Samira turned to a spiritual healer in Boston for guidance on navigating the mental toll of her disease.

[Samira Ahmed]

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 2015.

[Lauren Bright Pacheco]

Oh, my goodness.

[Samira Ahmed]

You can't make this stuff up. It's so mental.

[Lauren Bright Pacheco]

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 Samira's motivation to continue searching for answers. After testing negative for cancer, she embraced her clinical diagnosis of NMOSD and realized she needed to assemble a team of doctors to help her manage symptoms, including one of the foremost nmost experts in the country. Dr. Levy, do you Remember meeting her initially and where she was in terms of her health path.

[Dr. Michael Levy]

I met her at a visit when I came to Boston for what's called a patient day, which is where we host 15, 20, 25 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 every, everyone talking to each other.

[Samira Ahmed]

And 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 nmosd. He had done so much in the way of research and clinical care and even support. I 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. NMO, SD and MOGAD. Dr. Levy is our hero.

[Dr. Michael Levy]

When people introduce themselves as seronegative nmo, 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.

[Samira Ahmed]

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, neuro ophthalmologists, urology, gynecologist, like an ivf, fertility specialist, rheumatology, physical therapy, and last but certainly not least, a psychiatrist. I had to prioritize my mental health.

[Lauren Bright Pacheco]

Finally, with a supportive team of specialists, Samira began testing various immunosuppressive therapies and started biannual maintenance cytoscopy 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 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.

[Samira Ahmed]

The Semeyer foundation, also known as TSF, is now 10 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 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 therapy, agnostic, and really just trying to do things differently.

[Lauren Bright Pacheco]

So 10 years in, what is your life like?

[Samira Ahmed]

Beautiful. 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, Samira, you got the life that you ultimately wanted. You know, you get to wear beautiful clothes, travel the world, make people happy, have a platform.

[Sabrina Ahmed]

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 Dr. Levy made her feel seen. That's how she makes others feel seen who have this condition.

[Lauren Bright Pacheco]

You've changed so many lives because when I think of you at the age of 25 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. How much to date have you raised.

[Samira Ahmed]

For research in the glass? Ten years, we've raised about $5 million.

[Lauren Bright Pacheco]

Wow.

[Samira Ahmed]

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, 12 different cities, also different patient programming. I'm very passionate about knowledge being a source of power for patients and it being being an empowerment tool. So we invest a lot in patient education, webinars, podcasts, patient stories. So, yeah.

[Lauren Bright Pacheco]

While NMOSD can often be devastating for patients, the work Samira is leading with the foundation, along with the ongoing research worldwide, gives Dr. Levy optimism about future outcomes for the condition. If you were to wave a magic wand and you had unlimited funds, where would you put them right now in terms of research and why?

[Dr. Michael Levy]

I think the most exciting area 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 system off to this 1 protein, aquaporin 4. When the disease started, the immune system turned on and was told that Aquaporin 4 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 just to Aquaporin 4.

[Lauren Bright Pacheco]

Wow.

[Dr. Michael Levy]

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. And then you don't need to take immune suppressant medications for the rest of your life, that would be really cool.

[Lauren Bright Pacheco]

Are you cautiously optimistic that the C word cure is on the horizon within your lifetime?

[Dr. Michael Levy]

Within my lifetime, yes. I wouldn't make promises about five, even 10 years, but I think in the future, yes, it's going to be a real thing.

[Lauren Bright Pacheco]

And what would you hope people take away from Samira's story?

[Sabrina Ahmed]

I think that it's a good story in the sense that it has its trials and tribulations 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, but there are so many other rare illnesses and conditions that haven't been spoken about. So it just allowed them to break open a door for people who thought they were lost and had no way of connecting and gives them that platform.

[Samira Ahmed]

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 patient day, I organize that truly, we 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 we're afforded afflicted with. And dreams and aspirations may change, but they may actually end up being far greater. Lean in on your community. 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.

[Lauren Bright Pacheco]

If you want to learn more about NMOSD, you can visit the Samira foundation website at samirafoundation.org and if you know someone who might benefit from the information in this episode, we encourage you to please share it.

[Samira Ahmed]

My name is Samira Ahmed. I am the founder and Executive Director of the Samira foundation and over the last 10 years I have been living with a rare autoimmune disease called Neuromyelitis Optica Spectrum Disorder, also known as nmosd.

[Lauren Bright Pacheco]

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 16. 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 betraying her. The movements that were once effortless soon became nearly impossible. After 15 years of searching for relief, Lauren was finally diagnosed with psoriatic arthritis. Join us as we check in with Lauren, looking back at everything she sacrificed on her way to reestablishing her life and gaining 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@ symptomaticheartmedia.com and please rate and review Symptomatic wherever you get your podcasts. We'll see you next time. Until then, be well. Symptomatic is a production of Ruby Studio from iHeartMedia. Our show is hosted by me, Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster, our supervising producer is Ciara Kaiser, our writers are John Irwin and Diana Davis and our editor is Ciara spreen.

[Samira Ahmed]

Join me, Dr. Panico with Cyndi Lauper and chef Michelle Bernstein to talk about plaque's psoriasis and psoriatic arthritis, the potential connection and risk of developing permanent joint damage.

[Dr. Panico]

Cosentyx Secukinumab is prescribed for adults with moderate to severe plaque psoriasis 300mg dose and adults with active psoriatic arthritis 150mg dose. Don't use if you're allergic to Cosentyx before starting, get checked for tuberculosis. An increased risk of infections and lowered ability to fight them may occur like tuberculosis or other serious bacterial, fungal or viral infections. Some were fatal. Tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches or cough had a vaccine or planned to or if inflammatory bowel disease symptoms develop or worsen, serious allergic reactions and severe eczema like skin reactions may occur. Learn more at 1844cosentyx or cosentyx.com Cindy.