1 00:00:03,320 --> 00:00:07,720 Speaker 1: Movie. 2 00:00:08,800 --> 00:00:12,520 Speaker 2: I went from being fine to walked into a wall, 3 00:00:12,800 --> 00:00:16,400 Speaker 2: collapsed in my office, lost vision in both of my eyes, 4 00:00:16,520 --> 00:00:19,119 Speaker 2: and couldn't feel half of my body. That's when we 5 00:00:19,160 --> 00:00:22,080 Speaker 2: all decided, I need to go to the hospital right now. 6 00:00:22,680 --> 00:00:25,920 Speaker 3: It's not something that's outwardly visible, and so they'll end 7 00:00:26,000 --> 00:00:29,479 Speaker 3: up often in the emergency room because the symptoms are severe. 8 00:00:30,040 --> 00:00:33,479 Speaker 4: My older sister like asked the doctor is she going 9 00:00:33,560 --> 00:00:36,360 Speaker 4: to be okay? And the doctor had no response. 10 00:00:37,080 --> 00:00:40,240 Speaker 2: I felt like I was going to die, and all 11 00:00:40,280 --> 00:00:43,280 Speaker 2: I could think about was like, I don't want my 12 00:00:43,360 --> 00:00:44,840 Speaker 2: mom to lose another kid. 13 00:00:52,880 --> 00:00:56,480 Speaker 1: How terrifying would it be to fight an unknown enemy, 14 00:00:57,040 --> 00:01:00,840 Speaker 1: one you didn't recognize and didn't see coming. What if 15 00:01:00,880 --> 00:01:04,960 Speaker 1: that enemy was coming from within a disease that even 16 00:01:05,080 --> 00:01:10,720 Speaker 1: doctors couldn't identify. Nearly half of all Americans suffer from 17 00:01:10,840 --> 00:01:15,480 Speaker 1: some chronic illness, and many struggle for an accurate diagnosis. 18 00:01:16,560 --> 00:01:23,200 Speaker 1: These are their stories. I'm Lauren Bret Pacheco, and this 19 00:01:23,640 --> 00:01:42,240 Speaker 1: is symptomatic. Meeting Samayra Ahmed, You're immediately struck by her 20 00:01:42,360 --> 00:01:46,800 Speaker 1: radiant smile and the passion that fuels it. I did 21 00:01:46,800 --> 00:01:50,040 Speaker 1: go down the rabbit hole. Sumyra is a beautiful name, 22 00:01:50,160 --> 00:01:53,880 Speaker 1: thank you, but it has a very fitting meaning as 23 00:01:53,920 --> 00:01:58,240 Speaker 1: well for you. It translates as a famous woman, a 24 00:01:58,240 --> 00:02:03,040 Speaker 1: woman who entertains a successful woman. And so I thought, 25 00:02:03,080 --> 00:02:07,360 Speaker 1: how did your parents know to name you Samyra? Oh 26 00:02:07,400 --> 00:02:08,200 Speaker 1: my god, I. 27 00:02:08,120 --> 00:02:12,160 Speaker 2: Am shook because my entire thirty five years of existence, 28 00:02:13,040 --> 00:02:17,600 Speaker 2: I was sort of under the impression that Samayra stems 29 00:02:17,760 --> 00:02:22,919 Speaker 2: from the Arabic word samra, which means brown skin. 30 00:02:23,680 --> 00:02:28,560 Speaker 1: That did come up. But it's a successful, celebrated, famous woman, 31 00:02:28,760 --> 00:02:30,040 Speaker 1: a woman who entertains. 32 00:02:30,760 --> 00:02:31,760 Speaker 2: I have the chills. 33 00:02:32,360 --> 00:02:34,760 Speaker 1: I have the chills. So you'll have to check in 34 00:02:34,800 --> 00:02:36,800 Speaker 1: with your parents and see if they knew that when 35 00:02:36,800 --> 00:02:39,960 Speaker 1: they named you. For people who don't know you, How 36 00:02:40,000 --> 00:02:42,960 Speaker 1: would you describe yourself passionate? 37 00:02:43,600 --> 00:02:46,040 Speaker 2: I do think I'm sort of a natural born leader. 38 00:02:46,280 --> 00:02:50,000 Speaker 2: I always have been since I was a kid. Advocacy 39 00:02:50,040 --> 00:02:53,000 Speaker 2: has always been a part of my life in different forms. 40 00:02:53,040 --> 00:02:58,480 Speaker 2: So I believe in community. I'm a very community oriented person. 41 00:03:00,000 --> 00:03:04,040 Speaker 2: Describe myself as kind of a citizen of the world. 42 00:03:04,560 --> 00:03:11,520 Speaker 2: I am so fascinated by cultures, languages, different countries, how 43 00:03:11,600 --> 00:03:13,840 Speaker 2: people live, just people in general. 44 00:03:15,120 --> 00:03:18,840 Speaker 1: The youngest of three sisters, Samira, is just sixteen months 45 00:03:18,880 --> 00:03:22,160 Speaker 1: younger than her sister Sabrina, and they were raised almost 46 00:03:22,240 --> 00:03:23,000 Speaker 1: like twins. 47 00:03:23,440 --> 00:03:27,359 Speaker 4: I think because we're close in age, it was easier 48 00:03:27,440 --> 00:03:31,600 Speaker 4: for us to relate more. We dance, We went to 49 00:03:31,760 --> 00:03:37,080 Speaker 4: dance school together, we went to singing classes together, Sunday school, 50 00:03:37,400 --> 00:03:39,200 Speaker 4: and then you know, we went to the same high school. 51 00:03:39,400 --> 00:03:43,320 Speaker 4: So we had a very close relationship in the sense 52 00:03:43,400 --> 00:03:44,760 Speaker 4: that we did do a lot together. 53 00:03:45,440 --> 00:03:48,800 Speaker 2: For context, my parents immigrated to the US from a 54 00:03:48,840 --> 00:03:52,960 Speaker 2: small country in Asia called Bangladesh and they moved to 55 00:03:53,000 --> 00:03:55,440 Speaker 2: New Jersey, which is where I was born and brought up. 56 00:03:55,960 --> 00:03:59,480 Speaker 2: And in New Jersey, we were very fortunate to have 57 00:04:00,200 --> 00:04:05,240 Speaker 2: a very deep rooted Bengali community. So these were folks 58 00:04:05,280 --> 00:04:08,600 Speaker 2: who immigrated to the US like my parents, and their 59 00:04:08,680 --> 00:04:12,360 Speaker 2: children were born in the US like myself, and to 60 00:04:12,480 --> 00:04:16,560 Speaker 2: keep our culture alive, they developed this community that to 61 00:04:16,560 --> 00:04:19,760 Speaker 2: this day is still standing so strong. So part of 62 00:04:19,800 --> 00:04:24,120 Speaker 2: that included a dance school, a local dance school, a 63 00:04:24,160 --> 00:04:25,440 Speaker 2: singing school. 64 00:04:26,320 --> 00:04:31,839 Speaker 1: This community is where Samaira fell in love with performing, singing, dancing, acting, 65 00:04:31,960 --> 00:04:34,800 Speaker 1: all of it inspired by the Bollywood movies she grew 66 00:04:34,880 --> 00:04:38,479 Speaker 1: up watching with her family. She dreamed of becoming a star. 67 00:04:39,080 --> 00:04:41,680 Speaker 1: She even moved to India during high school to study 68 00:04:41,680 --> 00:04:47,240 Speaker 1: performing arts, displaying an adventurous bravery that would soon prove invaluable. 69 00:04:47,839 --> 00:04:51,520 Speaker 1: Despite the success of her budding acting career, Samyra decided 70 00:04:51,560 --> 00:04:55,760 Speaker 1: to prioritize her education and returned home to attend college. 71 00:04:56,640 --> 00:05:00,960 Speaker 1: What is amazing to me is that you had lived 72 00:05:01,680 --> 00:05:07,240 Speaker 1: a very international, very full life at such an early age, 73 00:05:07,360 --> 00:05:11,360 Speaker 1: and there were no health issues even now looking back 74 00:05:11,880 --> 00:05:16,320 Speaker 1: at your childhood, nothing that would have been a red flag. No, 75 00:05:16,800 --> 00:05:20,800 Speaker 1: I was so healthy. So then take me to when 76 00:05:21,320 --> 00:05:25,320 Speaker 1: your symptoms began. You were working full time living in Boston. 77 00:05:25,960 --> 00:05:29,440 Speaker 1: When did you begin to notice something wasn't quite right. 78 00:05:30,440 --> 00:05:34,479 Speaker 2: So I had taken a break from acting when I 79 00:05:34,480 --> 00:05:37,880 Speaker 2: went to university and a few years after that. So 80 00:05:37,960 --> 00:05:40,840 Speaker 2: this was now the spring of twenty fourteen, when I 81 00:05:40,880 --> 00:05:45,000 Speaker 2: was twenty four. I had oral surgery, very standard. I 82 00:05:45,040 --> 00:05:49,720 Speaker 2: got four of my impacted wisdom teeth extracted, and then 83 00:05:50,000 --> 00:05:54,520 Speaker 2: following the procedure, I had an infection, which obviously was uncomfortable, 84 00:05:54,600 --> 00:05:56,520 Speaker 2: but still I didn't really think much of it. I 85 00:05:56,560 --> 00:05:59,560 Speaker 2: went to the doctor. They fixed it with dressing, an 86 00:05:59,600 --> 00:06:02,400 Speaker 2: antibiotics and all of that stuff. So I was not 87 00:06:02,480 --> 00:06:05,840 Speaker 2: so worried about it. But two weeks after that infection, 88 00:06:06,960 --> 00:06:12,880 Speaker 2: I randomly lost vision in my right eye and it 89 00:06:13,080 --> 00:06:17,440 Speaker 2: started with just like a black, little circle, but then 90 00:06:17,520 --> 00:06:20,960 Speaker 2: over the next few days just kept expanding and expanding. 91 00:06:21,480 --> 00:06:23,440 Speaker 2: Now the irony in all of this is that I 92 00:06:23,560 --> 00:06:27,760 Speaker 2: was working in ophthalmology at the time, Thank God, because 93 00:06:28,200 --> 00:06:32,159 Speaker 2: I immediately approached some of the doctors that I worked with 94 00:06:32,680 --> 00:06:35,240 Speaker 2: and I said, hey, I can't see out of my 95 00:06:35,360 --> 00:06:39,280 Speaker 2: right eye. Immediately They're like, oh, let's check your corneas. 96 00:06:40,000 --> 00:06:43,039 Speaker 2: Everything was fine and structurally, and then I had something 97 00:06:43,080 --> 00:06:45,880 Speaker 2: called a visual field test, and this is where they 98 00:06:45,920 --> 00:06:49,159 Speaker 2: were able to see that I had lost about sixty 99 00:06:49,200 --> 00:06:52,120 Speaker 2: percent of my vision in my right eye. So my 100 00:06:52,200 --> 00:06:54,520 Speaker 2: field of vision just like kind of closed in. 101 00:06:55,600 --> 00:06:58,320 Speaker 1: That must have been terrifying. 102 00:06:59,279 --> 00:07:03,320 Speaker 2: It's so fun, Lauren. I wasn't afraid at all, because 103 00:07:03,960 --> 00:07:06,279 Speaker 2: I was like, oh, I have an eye issue. I 104 00:07:06,360 --> 00:07:09,920 Speaker 2: work with nine eye doctors, they all are affiliated with Harvard. 105 00:07:10,040 --> 00:07:12,640 Speaker 2: I'm gonna be okay, they'll figure this out. So I 106 00:07:12,760 --> 00:07:15,600 Speaker 2: wasn't scared at all. In fact, I wasn't taking it 107 00:07:15,640 --> 00:07:19,080 Speaker 2: as seriously as maybe I should have. So there was 108 00:07:19,200 --> 00:07:21,960 Speaker 2: only so much that they could do in the clinic, 109 00:07:22,520 --> 00:07:24,640 Speaker 2: so they sent me to the hospital to get an 110 00:07:24,760 --> 00:07:27,040 Speaker 2: MRI because they were like, they think that this might 111 00:07:27,080 --> 00:07:29,280 Speaker 2: be something neurologically related. 112 00:07:30,160 --> 00:07:37,120 Speaker 1: So that MRI revealed inflammation. Just explain how they gave 113 00:07:37,160 --> 00:07:38,520 Speaker 1: you the results of that MRI. 114 00:07:39,480 --> 00:07:43,440 Speaker 2: Yeah, it's so funny. Fourth of July twenty fourteen, I 115 00:07:43,520 --> 00:07:47,320 Speaker 2: show up to mass ionear with my weekend bag. I'm like, 116 00:07:47,320 --> 00:07:48,880 Speaker 2: all right, I'm going to get this MRI and go 117 00:07:48,920 --> 00:07:52,440 Speaker 2: to my fourth of July barbecue. So naive and I 118 00:07:52,480 --> 00:07:53,840 Speaker 2: thought I was going to be like in and out, 119 00:07:54,000 --> 00:07:57,760 Speaker 2: you know, super easy. And what was supposed to be 120 00:07:57,960 --> 00:08:01,840 Speaker 2: like a two three hour appointment turned into fourteen hours 121 00:08:01,880 --> 00:08:06,080 Speaker 2: in the emergency room, having seen specialist after specialists in 122 00:08:06,240 --> 00:08:08,680 Speaker 2: all of whom are just kind of scratching their heads 123 00:08:08,760 --> 00:08:14,080 Speaker 2: wondering why is this young, otherwise healthy woman rapidly losing 124 00:08:14,200 --> 00:08:18,680 Speaker 2: vision hour by hour? And when I came out of 125 00:08:18,720 --> 00:08:22,920 Speaker 2: the MRI, I was greeted by a couple of neuroophthalmologists 126 00:08:23,800 --> 00:08:28,200 Speaker 2: and they said, Samiri, you have lost vision because you 127 00:08:28,280 --> 00:08:32,640 Speaker 2: have inflammation on the optic nerve in your brain. And 128 00:08:33,520 --> 00:08:38,840 Speaker 2: my initial reaction was no, I don't because you just 129 00:08:38,960 --> 00:08:42,320 Speaker 2: cannot process something like that at such a young age 130 00:08:42,360 --> 00:08:46,080 Speaker 2: when you're perfectly healthy. Otherwise somebody's telling you you have 131 00:08:46,160 --> 00:08:49,080 Speaker 2: inflammation in your brain and you just don't believe it 132 00:08:49,120 --> 00:08:52,000 Speaker 2: because at twenty four years old, you think you're invincible. 133 00:08:52,480 --> 00:08:54,320 Speaker 2: So I just denied it. I was like, no, that's 134 00:08:54,360 --> 00:08:57,559 Speaker 2: not mine. You must be mistaken, and they're like, no, no, no, 135 00:08:57,880 --> 00:08:58,440 Speaker 2: here it is. 136 00:08:59,240 --> 00:09:02,480 Speaker 1: Did they row out ideas as to what could be 137 00:09:02,600 --> 00:09:03,120 Speaker 1: causing it. 138 00:09:03,800 --> 00:09:07,600 Speaker 2: So I was admitted right away into adult neurology and 139 00:09:07,640 --> 00:09:11,280 Speaker 2: they started loading me up with ivy steroids and I was, 140 00:09:11,400 --> 00:09:13,320 Speaker 2: of course complying and all that, but you know, you 141 00:09:13,320 --> 00:09:15,520 Speaker 2: have questions. You're like, what is happening? Why am I 142 00:09:15,600 --> 00:09:18,200 Speaker 2: getting this? And so basically what was explained to me 143 00:09:18,320 --> 00:09:22,920 Speaker 2: during the onset was that I had an adiopathic case 144 00:09:23,120 --> 00:09:26,600 Speaker 2: of optic neuritis, which is vision loss duit to inflammation, 145 00:09:27,280 --> 00:09:29,880 Speaker 2: and that my vision would return within three months to 146 00:09:29,960 --> 00:09:33,720 Speaker 2: a year. They said, don't worry, you're going to be fine. 147 00:09:34,400 --> 00:09:37,480 Speaker 2: You do have a sixteen percent chance of developing MS 148 00:09:37,559 --> 00:09:40,080 Speaker 2: at some point in your life, but it's such a 149 00:09:40,080 --> 00:09:43,440 Speaker 2: low percentage. We're pretty confident you're going to get your 150 00:09:43,520 --> 00:09:46,080 Speaker 2: vision back and all will be back to normal. When 151 00:09:46,080 --> 00:09:48,400 Speaker 2: I got discharged. They said, just take some vitamin D. 152 00:09:48,520 --> 00:09:53,640 Speaker 2: You're severely vitamin D deficient. So again, at twenty four, 153 00:09:54,040 --> 00:09:56,959 Speaker 2: when all the experts around you are not worried and 154 00:09:57,000 --> 00:09:59,679 Speaker 2: saying you're going to be okay, You're like, okay, I'm 155 00:09:59,679 --> 00:10:01,600 Speaker 2: going to be fine. And I moved on with my 156 00:10:01,640 --> 00:10:04,280 Speaker 2: life even with vision loss. 157 00:10:04,600 --> 00:10:08,280 Speaker 1: Believing these troubles would soon pass. So Mayra returned to 158 00:10:08,320 --> 00:10:11,960 Speaker 1: her normal routine work, family gatherings, and nights out with 159 00:10:12,040 --> 00:10:15,239 Speaker 1: friends until her symptoms quickly resurfaced. 160 00:10:16,080 --> 00:10:19,400 Speaker 2: I turned twenty five just a couple weeks later, and 161 00:10:19,880 --> 00:10:23,600 Speaker 2: I maintain to this day I partied like a rock star, 162 00:10:23,679 --> 00:10:28,120 Speaker 2: as I should have, because you know, twenty five Golden Year, 163 00:10:28,800 --> 00:10:32,320 Speaker 2: and yeah, just a couple no. A week after my 164 00:10:32,360 --> 00:10:36,000 Speaker 2: twenty fifth birthday, I lost vision in both of my eyes. 165 00:10:36,440 --> 00:10:39,640 Speaker 2: I couldn't feel half of my body. Everything felt like 166 00:10:39,720 --> 00:10:42,720 Speaker 2: it was on fire. I was also in some pain, 167 00:10:43,679 --> 00:10:48,840 Speaker 2: severe nausea, and instead of staying home like a normal 168 00:10:48,880 --> 00:10:52,320 Speaker 2: person would when they're not feeling well, I felt safer 169 00:10:52,760 --> 00:10:56,480 Speaker 2: being in my office around all of these doctors. I 170 00:10:56,520 --> 00:10:58,480 Speaker 2: didn't want to be at home alone with all of 171 00:10:58,480 --> 00:11:05,960 Speaker 2: this happening. I was walking or hobbling to my office 172 00:11:06,000 --> 00:11:09,520 Speaker 2: trying to and luckily it was in a populated area, 173 00:11:10,160 --> 00:11:14,960 Speaker 2: and because I couldn't see, I literally walked into a wall, 174 00:11:15,240 --> 00:11:18,360 Speaker 2: bumped my forehead and then I collapsed, and I think 175 00:11:18,400 --> 00:11:21,160 Speaker 2: I did lose consciousness for a few seconds, but it 176 00:11:21,240 --> 00:11:25,640 Speaker 2: was quick because next thing I saw, my boss was like, hello, 177 00:11:25,679 --> 00:11:28,560 Speaker 2: are you okay? And then you know, my coworker was 178 00:11:28,600 --> 00:11:31,240 Speaker 2: there too, and I was just like, I don't think 179 00:11:31,280 --> 00:11:33,760 Speaker 2: I'm okay. And they knew that because they had been 180 00:11:33,840 --> 00:11:37,200 Speaker 2: checking in on me almost every few hours. Now, imagine 181 00:11:37,360 --> 00:11:39,719 Speaker 2: I work with all of these specialists that are at 182 00:11:39,760 --> 00:11:43,160 Speaker 2: Harvard and mess General and they have all the pedigrees 183 00:11:43,200 --> 00:11:46,240 Speaker 2: in the world, and they treat you know, eye problems 184 00:11:46,280 --> 00:11:49,079 Speaker 2: all day, every day of so many kinds. This was 185 00:11:49,120 --> 00:11:51,680 Speaker 2: the first time that they saw something like this, so 186 00:11:51,800 --> 00:11:54,640 Speaker 2: even they were nervous, and seeing the nervousness on my 187 00:11:54,720 --> 00:11:58,559 Speaker 2: boss's face, that was when I started to take this seriously. 188 00:12:00,480 --> 00:12:03,920 Speaker 1: Samayra had not yet shared any details with her family 189 00:12:04,360 --> 00:12:08,240 Speaker 1: about the first episode or the inflammation on her optic nerve. 190 00:12:08,880 --> 00:12:12,080 Speaker 1: She had kept it all to herself. Now, on the 191 00:12:12,080 --> 00:12:15,120 Speaker 1: way to the er, she faced the difficult task of 192 00:12:15,160 --> 00:12:19,000 Speaker 1: sharing this news with her family. Something she had been dreading. 193 00:12:19,600 --> 00:12:21,800 Speaker 2: I didn't tell my family the first episode because I 194 00:12:21,800 --> 00:12:24,520 Speaker 2: didn't want to startle anyone. No one seemed to think 195 00:12:24,559 --> 00:12:26,560 Speaker 2: it was a big deal in the hospital, so I 196 00:12:26,600 --> 00:12:28,720 Speaker 2: was like, I'm not going to worry people for no reason. 197 00:12:29,360 --> 00:12:31,800 Speaker 2: But I was in the ambulance. I called my family. 198 00:12:32,000 --> 00:12:34,559 Speaker 2: I said, you guys need to come to Boston. I 199 00:12:34,640 --> 00:12:36,000 Speaker 2: think something's very wrong. 200 00:12:36,600 --> 00:12:39,240 Speaker 4: At the time, I was like, very fresh in my career, 201 00:12:39,960 --> 00:12:43,240 Speaker 4: and I got the phone call, and it's like a 202 00:12:43,240 --> 00:12:46,360 Speaker 4: little daunting to get a phone call like hey, listen, 203 00:12:46,480 --> 00:12:50,600 Speaker 4: like very nonslotly, and then when she got into it, 204 00:12:50,640 --> 00:12:54,400 Speaker 4: of course more emotionally. I honestly didn't know the extent 205 00:12:54,440 --> 00:12:58,559 Speaker 4: of how detailed of an issue it was. None of 206 00:12:58,640 --> 00:13:01,480 Speaker 4: us knew what it was until you get there and 207 00:13:01,520 --> 00:13:04,440 Speaker 4: you're there for days on end, and that's when it 208 00:13:04,480 --> 00:13:08,160 Speaker 4: becomes more like, Okay, things are getting more real, some 209 00:13:08,320 --> 00:13:09,320 Speaker 4: things out right. 210 00:13:09,880 --> 00:13:12,960 Speaker 2: And within hours everyone was in Boston. This time, I 211 00:13:12,960 --> 00:13:15,680 Speaker 2: could tell that the hospital also was taking it seriously, 212 00:13:15,760 --> 00:13:18,400 Speaker 2: not that they weren't before, but I think they also 213 00:13:18,520 --> 00:13:21,880 Speaker 2: understood that things have evolved, things have progressed. This is 214 00:13:21,960 --> 00:13:24,960 Speaker 2: not what we were dealing with the first time, and 215 00:13:25,080 --> 00:13:28,840 Speaker 2: so I was taken in right away. Four hours of 216 00:13:28,920 --> 00:13:33,560 Speaker 2: imaging twenty vials of blood. I had my first lumbar puncture, 217 00:13:33,600 --> 00:13:36,720 Speaker 2: which was the worst, and I was started on ivy 218 00:13:36,720 --> 00:13:37,839 Speaker 2: steroids right away. 219 00:13:38,480 --> 00:13:41,679 Speaker 1: For people who don't understand, can you just explain what 220 00:13:41,760 --> 00:13:44,760 Speaker 1: a lumbar puncture is and how it feels. 221 00:13:45,000 --> 00:13:49,600 Speaker 2: Oh, yes, it's when they extract with a giant needle 222 00:13:49,920 --> 00:13:55,000 Speaker 2: cerebral spinal fluid from your spine, and it is I mean, 223 00:13:55,040 --> 00:13:57,920 Speaker 2: I have chills talking about it now. I've had it 224 00:13:57,960 --> 00:13:59,920 Speaker 2: twice in my life. It is one of the most 225 00:14:00,800 --> 00:14:03,640 Speaker 2: traumatic things I've ever experienced in my life. 226 00:14:04,559 --> 00:14:10,520 Speaker 1: So take me to your family, going from no knowledge 227 00:14:10,559 --> 00:14:15,840 Speaker 1: that there's a problem to stat it's an emergency. Take 228 00:14:15,880 --> 00:14:18,160 Speaker 1: me to the moment they all are surrounding you. 229 00:14:19,000 --> 00:14:21,680 Speaker 2: I was on a lot of medications because of how 230 00:14:21,760 --> 00:14:25,040 Speaker 2: much pain I was in, So the first time I 231 00:14:25,120 --> 00:14:31,800 Speaker 2: remember seeing them was after my lumbar puncture. I was 232 00:14:31,920 --> 00:14:35,360 Speaker 2: in my room. I was definitely on morphine and I 233 00:14:35,440 --> 00:14:38,920 Speaker 2: woke up from I guess whatever, maybe a nap or 234 00:14:39,000 --> 00:14:43,840 Speaker 2: a medication induced nap, and confused. I could also see 235 00:14:43,840 --> 00:14:48,560 Speaker 2: the look of fear on my mom's face and my 236 00:14:48,720 --> 00:14:52,800 Speaker 2: sister's just kind of trying to understand what was going on. 237 00:14:53,720 --> 00:14:56,360 Speaker 2: It's so interesting. I never really talk about this, so 238 00:14:56,360 --> 00:14:58,600 Speaker 2: if I get worked up, it's because it's sometimes it's 239 00:14:58,680 --> 00:15:02,120 Speaker 2: traumatic to think about. But like, I'm the kind of 240 00:15:02,200 --> 00:15:06,080 Speaker 2: person that it brings me joy to bring joy to 241 00:15:06,120 --> 00:15:09,960 Speaker 2: people's lives, making people smile, making them feel good. This 242 00:15:10,120 --> 00:15:12,240 Speaker 2: is my love language and it has been since I 243 00:15:12,280 --> 00:15:14,560 Speaker 2: was a kid. I never want to be the person 244 00:15:14,680 --> 00:15:18,480 Speaker 2: who is adding stress to somebody's life or making them upset, 245 00:15:18,680 --> 00:15:21,640 Speaker 2: or making them angry or cry. And it was so 246 00:15:21,800 --> 00:15:26,280 Speaker 2: obvious that my family, after all of what we have 247 00:15:26,400 --> 00:15:32,320 Speaker 2: been through separately, was now experiencing another trauma or tragedy 248 00:15:32,720 --> 00:15:36,040 Speaker 2: and it was because of me. So I felt really guilty. 249 00:15:37,040 --> 00:15:39,239 Speaker 1: I'm gonna cry. That breaks my heart. 250 00:15:40,080 --> 00:15:44,160 Speaker 2: Yeah I was. I felt bad because. 251 00:15:44,960 --> 00:15:47,720 Speaker 1: I I didn't want to add more stress to my 252 00:15:47,880 --> 00:15:49,040 Speaker 1: family's lives. 253 00:15:49,480 --> 00:15:51,760 Speaker 2: We had already been through so much. 254 00:15:53,080 --> 00:15:53,240 Speaker 3: And. 255 00:15:54,760 --> 00:16:00,600 Speaker 5: I was thinking about I had a brother passed away 256 00:16:00,640 --> 00:16:05,360 Speaker 5: when he was three weeks old, and he passed before 257 00:16:05,400 --> 00:16:07,680 Speaker 5: I was born, but I have like this crazy connection 258 00:16:07,800 --> 00:16:10,960 Speaker 5: to him, and all I could think about was. 259 00:16:10,840 --> 00:16:14,040 Speaker 2: Like, I don't want my mom to lose another kid. 260 00:16:17,880 --> 00:16:21,600 Speaker 1: Sabrina, seeing your little sister that way in the hospital. 261 00:16:21,960 --> 00:16:25,120 Speaker 1: What were your greatest fears and concerns at the time 262 00:16:25,640 --> 00:16:29,640 Speaker 1: and what was being expressed by the family not in 263 00:16:29,680 --> 00:16:30,680 Speaker 1: front of Samira. 264 00:16:31,400 --> 00:16:36,640 Speaker 4: I think the unknown, right, like not knowing what this was, 265 00:16:37,480 --> 00:16:41,080 Speaker 4: what treatment she needed, the effects of the treatment, how 266 00:16:41,120 --> 00:16:43,400 Speaker 4: if it's going to be positive negative? Like you know, 267 00:16:43,480 --> 00:16:46,440 Speaker 4: it was all trial and error. I think one of 268 00:16:46,960 --> 00:16:49,320 Speaker 4: the things that happened to my older sister like asked 269 00:16:49,360 --> 00:16:52,360 Speaker 4: the doctor is she going to be okay? And the 270 00:16:52,440 --> 00:16:55,600 Speaker 4: doctor had no response. That's when it was like, okay, 271 00:16:56,160 --> 00:16:57,920 Speaker 4: no response is not a good response. 272 00:17:00,560 --> 00:17:04,000 Speaker 1: Within a few weeks, Samaira went from a healthy twenty 273 00:17:04,000 --> 00:17:08,080 Speaker 1: four year old enjoying her life to rapidly losing her vision. 274 00:17:08,680 --> 00:17:12,399 Speaker 1: Inflammation was spreading through her brain as doctors struggled to 275 00:17:12,400 --> 00:17:16,240 Speaker 1: stabilize her. What are the doctors telling you at this moment. 276 00:17:17,000 --> 00:17:18,919 Speaker 2: At that point, it was the first time I had 277 00:17:18,960 --> 00:17:21,600 Speaker 2: heard the name of my diagnosis. So they told me 278 00:17:21,680 --> 00:17:26,400 Speaker 2: that I was suspected to have neuromi lightest optica. They 279 00:17:26,440 --> 00:17:29,080 Speaker 2: don't know why it happens. At the time, there was 280 00:17:29,160 --> 00:17:33,560 Speaker 2: no approved therapy, so they would have to try different treatments. 281 00:17:34,240 --> 00:17:37,919 Speaker 2: They told me that there was no cure and that 282 00:17:38,000 --> 00:17:42,159 Speaker 2: it was very rare. And I had two questions for 283 00:17:42,200 --> 00:17:44,639 Speaker 2: them as soon as I heard all of this, which 284 00:17:44,800 --> 00:17:48,280 Speaker 2: was am I going to die from this? To which 285 00:17:48,320 --> 00:17:53,040 Speaker 2: they answered they don't know. And I asked, did I 286 00:17:53,200 --> 00:17:57,720 Speaker 2: do something to bring this on to myself? Because I 287 00:17:57,760 --> 00:18:00,880 Speaker 2: couldn't make sense why it happened. 288 00:18:01,520 --> 00:18:08,600 Speaker 1: I want to hug you. That's so much. Neuromylitis optica 289 00:18:08,680 --> 00:18:15,280 Speaker 1: spectrum disorder or NMSD is an extremely rare disease. However, 290 00:18:15,640 --> 00:18:18,960 Speaker 1: doctor Michael Levy and the system Professor of Neurology at 291 00:18:19,000 --> 00:18:24,879 Speaker 1: Harvard Medical School and neurologist at Massachusetts General Hospital specializes 292 00:18:25,040 --> 00:18:29,240 Speaker 1: in treating it. Now, if you had to, not necessarily 293 00:18:29,280 --> 00:18:32,280 Speaker 1: in a nutshell, but in Layman's terms, could you give 294 00:18:32,280 --> 00:18:35,520 Speaker 1: me a definition for an MOOSD. 295 00:18:36,400 --> 00:18:40,080 Speaker 3: There's an immune response against a self protein called the 296 00:18:40,119 --> 00:18:43,719 Speaker 3: aquaporn four. Your immune system is not supposed to react 297 00:18:43,720 --> 00:18:47,359 Speaker 3: to it, but in people with NMO it does, and 298 00:18:47,440 --> 00:18:51,720 Speaker 3: specifically to the acoporn four protein within the spinal cord 299 00:18:51,760 --> 00:18:55,479 Speaker 3: and the optic nerve, and when it attacks the optic 300 00:18:55,560 --> 00:18:59,560 Speaker 3: nerves and the spinal cord, it leads to blindness and paralysis. 301 00:19:01,119 --> 00:19:06,960 Speaker 1: As doctor Leevy further explains NMOSD is most commonly found 302 00:19:07,000 --> 00:19:11,560 Speaker 1: in women, particularly those of Asian or African ancestry. While 303 00:19:11,640 --> 00:19:15,560 Speaker 1: its development is not well understood, genetics are believed to 304 00:19:15,600 --> 00:19:20,920 Speaker 1: play a role. Although Samayra tested negative for NMSD antibodies, 305 00:19:21,240 --> 00:19:25,240 Speaker 1: her clinical diagnosis was based on her full symptomatic picture 306 00:19:25,560 --> 00:19:29,520 Speaker 1: and medical history, including the severity and frequency of her 307 00:19:29,600 --> 00:19:34,480 Speaker 1: flare ups. What are some other common symptoms or maybe 308 00:19:34,920 --> 00:19:37,480 Speaker 1: early indicators that that's the progression. 309 00:19:38,200 --> 00:19:41,719 Speaker 3: There are a few early indicators if the immune system 310 00:19:41,920 --> 00:19:44,560 Speaker 3: attacks the optic nerve. One of the first signs is 311 00:19:44,600 --> 00:19:48,119 Speaker 3: pain with eye movements. It feels like every time you 312 00:19:48,160 --> 00:19:50,359 Speaker 3: move your eyes up or down or left or right, 313 00:19:50,400 --> 00:19:52,920 Speaker 3: it hurts, and so people just want to look straight 314 00:19:53,040 --> 00:19:56,199 Speaker 3: or just keep their eyes closed. And then that evolves 315 00:19:56,240 --> 00:19:59,960 Speaker 3: fairly quickly over hours to days into a gray spot 316 00:20:00,520 --> 00:20:03,440 Speaker 3: over some part of your vision, usually in one eye, 317 00:20:03,480 --> 00:20:06,400 Speaker 3: but sometimes both eyes, and then that evolves to near 318 00:20:06,400 --> 00:20:09,800 Speaker 3: complete vision loss over about a week or two. So 319 00:20:09,880 --> 00:20:12,840 Speaker 3: that's the typical course for an attack in the optic nerve. 320 00:20:13,400 --> 00:20:17,199 Speaker 3: If it attacks the spinal cord, the typical progression is 321 00:20:17,720 --> 00:20:21,359 Speaker 3: either weakness in an arm or leg or both, or 322 00:20:21,480 --> 00:20:26,959 Speaker 3: numbness in the same distribution, and usually pain pain feels 323 00:20:27,040 --> 00:20:31,240 Speaker 3: like abanding, wrapping pain around your abdomen. And then it's 324 00:20:31,280 --> 00:20:35,560 Speaker 3: also usually associated with bowel and bladder dysfunction retention, so 325 00:20:35,640 --> 00:20:38,639 Speaker 3: things don't come out like they should. When I first 326 00:20:38,680 --> 00:20:42,880 Speaker 3: started working in this space, the average time from onset 327 00:20:42,920 --> 00:20:47,520 Speaker 3: to diagnosis was over three years. Now it's under nine months. Wow, 328 00:20:47,600 --> 00:20:50,720 Speaker 3: So it's not great now, But I would say we've 329 00:20:50,760 --> 00:20:53,680 Speaker 3: made a lot of progress because we have a blood test. 330 00:20:54,520 --> 00:21:01,240 Speaker 1: How do you support your patience in managing the anxiety 331 00:21:01,560 --> 00:21:04,560 Speaker 1: and the depression and the fear that must come with 332 00:21:04,680 --> 00:21:06,240 Speaker 1: receiving the diagnosis. 333 00:21:06,680 --> 00:21:09,159 Speaker 3: Well, I'm always honest with people. I tell them that 334 00:21:09,280 --> 00:21:13,000 Speaker 3: in my clinic, twenty three percent of people are in wheelchairs, 335 00:21:13,880 --> 00:21:17,720 Speaker 3: sixty percent are blind in at least one eye, who 336 00:21:17,760 --> 00:21:20,000 Speaker 3: have the alkal porn fo antibody they are I can't 337 00:21:20,640 --> 00:21:23,160 Speaker 3: lie to them and say, oh, it'll be okay. And 338 00:21:23,400 --> 00:21:25,520 Speaker 3: it used to be that thirty percent of our patient 339 00:21:25,560 --> 00:21:28,760 Speaker 3: population would die of NMO within five years. That's no 340 00:21:28,840 --> 00:21:32,639 Speaker 3: longer the case. The mortality has plummeted from thirty percent 341 00:21:32,680 --> 00:21:36,800 Speaker 3: to nine percent. Room to improve, for sure, But I 342 00:21:36,920 --> 00:21:39,320 Speaker 3: start with those grim figures. But then I tell them 343 00:21:39,440 --> 00:21:42,200 Speaker 3: the good news about NMO, because there is one piece 344 00:21:42,200 --> 00:21:45,639 Speaker 3: of good news about NMO, which is that if we 345 00:21:45,720 --> 00:21:49,920 Speaker 3: start treatment and we can prevent future attacks, then they'll 346 00:21:49,960 --> 00:21:52,560 Speaker 3: never be worse than they are today, really, because there's 347 00:21:52,560 --> 00:21:57,520 Speaker 3: no degenerative disease process going on in the background, nothing 348 00:21:57,600 --> 00:22:01,720 Speaker 3: like that. All of the disability is mediated by attacks. 349 00:22:02,080 --> 00:22:04,800 Speaker 3: So if we could prevent attacks, we can prevent all 350 00:22:04,840 --> 00:22:05,720 Speaker 3: future problems. 351 00:22:08,119 --> 00:22:12,040 Speaker 1: Samaira was blindsided by all of this, but her immediate 352 00:22:12,119 --> 00:22:15,760 Speaker 1: concern was the inflammation in her brain. Put on a 353 00:22:15,840 --> 00:22:19,119 Speaker 1: regimen of treatments to contain it, she now faced the 354 00:22:19,160 --> 00:22:22,960 Speaker 1: psychological toll as a new part of the balancing act. 355 00:22:23,920 --> 00:22:26,160 Speaker 2: When I went home from the hospital, and of course 356 00:22:26,240 --> 00:22:31,480 Speaker 2: everything changed. My dreams, my aspirations, my fears were now different. 357 00:22:32,200 --> 00:22:35,159 Speaker 2: I was taking medicine now eighteen pills a day, I 358 00:22:35,240 --> 00:22:41,199 Speaker 2: was getting chemotherapy, and uncertain of what my even the 359 00:22:41,240 --> 00:22:43,879 Speaker 2: next six months were going to look like. And so 360 00:22:44,000 --> 00:22:47,080 Speaker 2: I was in bed rest, just trying to relax and 361 00:22:47,119 --> 00:22:50,280 Speaker 2: recover and make sense of all of what had happened. 362 00:22:51,119 --> 00:22:57,400 Speaker 2: And I thought to myself, Man, even under these circumstances, 363 00:22:58,080 --> 00:23:03,160 Speaker 2: I'm still so lucky, hie. I'm in the United States. 364 00:23:03,720 --> 00:23:07,359 Speaker 2: I'm in Massachusetts. I'm in Boston, which is like a 365 00:23:07,520 --> 00:23:10,440 Speaker 2: medical mecca in this country in the world. 366 00:23:11,359 --> 00:23:14,800 Speaker 1: So just tell me what your symptoms. Because you get 367 00:23:14,800 --> 00:23:18,720 Speaker 1: a diagnosis and you're getting treatment, but that doesn't mean 368 00:23:18,920 --> 00:23:22,800 Speaker 1: it's cured or it's gone. How did your symptoms progress. 369 00:23:23,680 --> 00:23:26,720 Speaker 2: The vision was very in and out, kind of dependent 370 00:23:26,840 --> 00:23:30,480 Speaker 2: on the day, so I definitely struggled with vision loss 371 00:23:30,720 --> 00:23:34,560 Speaker 2: most chronically for the first few years, but also just 372 00:23:34,640 --> 00:23:39,600 Speaker 2: like feeling nerve pain and burning sensations in my body 373 00:23:40,600 --> 00:23:44,000 Speaker 2: to the point where I felt totally debilitated. And for 374 00:23:44,119 --> 00:23:46,679 Speaker 2: someone who is so expressive with their body, it was 375 00:23:47,280 --> 00:23:49,480 Speaker 2: really I felt like I was a prisoner in my 376 00:23:49,560 --> 00:23:52,560 Speaker 2: own body. I also lost a bit of hearing in 377 00:23:52,600 --> 00:23:55,560 Speaker 2: my right ear when all of this happened, so that 378 00:23:55,760 --> 00:24:00,199 Speaker 2: sense was also affected. Because of all these medications I 379 00:24:00,280 --> 00:24:03,119 Speaker 2: was on, I couldn't taste food the way I wanted 380 00:24:03,119 --> 00:24:06,359 Speaker 2: to taste food, so in a way, all of my 381 00:24:06,480 --> 00:24:10,120 Speaker 2: senses were affected by this. And to make matters even 382 00:24:10,200 --> 00:24:16,239 Speaker 2: more complicated, I don't test positive for the antibody that 383 00:24:16,400 --> 00:24:20,080 Speaker 2: is associated with my disease. Thirty percent of us actually 384 00:24:20,160 --> 00:24:24,840 Speaker 2: don't test positive. So what that meant for me was Okay, 385 00:24:24,880 --> 00:24:28,359 Speaker 2: we've got this like working diagnosis, but let's check you 386 00:24:28,400 --> 00:24:32,399 Speaker 2: for everything else, just in case we've missed something. On 387 00:24:32,480 --> 00:24:35,480 Speaker 2: top of that, I had relapsed three times in the 388 00:24:35,520 --> 00:24:38,800 Speaker 2: first you know, six months, So just like in and 389 00:24:38,840 --> 00:24:43,240 Speaker 2: out of hospitals, getting aggressive treatments and interventions, but also 390 00:24:43,600 --> 00:24:48,680 Speaker 2: looking for a potential other diagnosis, then becoming sterile from 391 00:24:48,880 --> 00:24:51,680 Speaker 2: you know, my medications, and being told at twenty five 392 00:24:51,880 --> 00:24:55,080 Speaker 2: that you may never be able to have children. So 393 00:24:55,240 --> 00:25:01,680 Speaker 2: if you want to even consider it, freeze your eggs. 394 00:25:00,040 --> 00:25:02,520 Speaker 4: Such a young age, freezing your eggs. It's like, Okay, 395 00:25:03,240 --> 00:25:06,240 Speaker 4: we're being smart about this, you know, before the chema, 396 00:25:06,480 --> 00:25:10,480 Speaker 4: before any other the drugs, but like it's also like okay, wow, 397 00:25:10,920 --> 00:25:12,800 Speaker 4: So again, everything was just so confusing. 398 00:25:13,520 --> 00:25:15,879 Speaker 2: It was just crazy. I mean, I was going through 399 00:25:16,560 --> 00:25:21,560 Speaker 2: treatment after treatment for this disease, taking oral medications every day, now, 400 00:25:21,600 --> 00:25:26,399 Speaker 2: harvesting my eggs, feeling so uncomfortable in my body, looking 401 00:25:26,440 --> 00:25:29,879 Speaker 2: for a diagnosis, relapsing after relapsing. 402 00:25:30,440 --> 00:25:36,280 Speaker 1: You must have been so exhausted, though, just emotionally, spiritually, physically, 403 00:25:36,520 --> 00:25:42,119 Speaker 1: mentally exhausted from the full time burden of everything you 404 00:25:42,200 --> 00:25:43,320 Speaker 1: were feeling. 405 00:25:44,240 --> 00:25:49,320 Speaker 2: Yeah, I was, I basically became a professional patient. I 406 00:25:49,480 --> 00:25:52,520 Speaker 2: was exhausted, but I didn't have time to think about 407 00:25:52,520 --> 00:25:55,399 Speaker 2: how exhausted I was. I just kept going and going 408 00:25:55,440 --> 00:25:59,680 Speaker 2: and going and going. In fact, having free time made 409 00:25:59,800 --> 00:26:03,280 Speaker 2: me feel uncomfortable because that's when I had the time 410 00:26:03,320 --> 00:26:05,399 Speaker 2: to think about what was going on with me, and 411 00:26:05,480 --> 00:26:08,160 Speaker 2: I avoided it like the plague. So I almost made 412 00:26:08,200 --> 00:26:12,520 Speaker 2: myself busy on purpose to avoid understanding the gravity of 413 00:26:12,560 --> 00:26:13,520 Speaker 2: what was going on. 414 00:26:14,359 --> 00:26:18,000 Speaker 1: Sabrina, as her sister, how did you support her in 415 00:26:18,080 --> 00:26:22,399 Speaker 1: that moment? Because the initial information and description that comes 416 00:26:22,440 --> 00:26:25,000 Speaker 1: with a diagnosis is not good. 417 00:26:25,720 --> 00:26:28,480 Speaker 4: So I'll be quite frank. My whole entire family is 418 00:26:28,560 --> 00:26:31,359 Speaker 4: very emotional, and I think that just added more stress 419 00:26:31,400 --> 00:26:34,960 Speaker 4: to her. So it's more like being a support system 420 00:26:34,960 --> 00:26:37,640 Speaker 4: in the things like Okay, cry it out and go 421 00:26:37,720 --> 00:26:40,879 Speaker 4: through your thoughts, but at the same time, you are 422 00:26:41,000 --> 00:26:43,080 Speaker 4: still here so you're not. 423 00:26:43,160 --> 00:26:47,520 Speaker 1: Hit it alone. Since Samaira continued to test negative for 424 00:26:47,720 --> 00:26:52,280 Speaker 1: NMOSD antibodies, the doctors ran several tests to rule out 425 00:26:52,400 --> 00:26:56,440 Speaker 1: other potential causes, including a pet scan to check for cancer. 426 00:26:57,280 --> 00:27:02,280 Speaker 2: I think the darkest moment was is in this quest 427 00:27:02,280 --> 00:27:04,520 Speaker 2: to find out what was going on with me, there 428 00:27:04,600 --> 00:27:08,520 Speaker 2: was this idea that Samyra, you might have cancer actually, 429 00:27:09,480 --> 00:27:13,360 Speaker 2: and I was like cancer, what do you mean? And 430 00:27:13,400 --> 00:27:15,399 Speaker 2: they were like, no, no, no, this would actually be 431 00:27:15,440 --> 00:27:18,160 Speaker 2: one of those situations where you'd rather have cancer. 432 00:27:20,720 --> 00:27:25,000 Speaker 1: We'll be right back with Symptomatic, a Medical Mystery Podcast. 433 00:27:27,920 --> 00:27:37,679 Speaker 1: Now back to Symptomatic, a Medical Mystery Podcast. Samira's battle 434 00:27:37,760 --> 00:27:40,880 Speaker 1: with a s elusive disease led to a rapid decline 435 00:27:40,880 --> 00:27:43,840 Speaker 1: in her health. She lost over sixty percent of her 436 00:27:43,920 --> 00:27:48,679 Speaker 1: vision in both eyes, prompting doctors to discover severe inflammation 437 00:27:48,800 --> 00:27:52,959 Speaker 1: in her brain, affecting the optic nerve. Constantly in and 438 00:27:53,000 --> 00:27:55,199 Speaker 1: out of the hospital and feeling like a burden to 439 00:27:55,240 --> 00:28:00,960 Speaker 1: her family, Samirah carried enormous emotional weight. Though her suspected 440 00:28:01,160 --> 00:28:05,479 Speaker 1: in MSD, none of the tests were conclusive. Nearing her 441 00:28:05,520 --> 00:28:09,920 Speaker 1: breaking point, she desperately hoped the pet scan would come 442 00:28:10,000 --> 00:28:14,359 Speaker 1: back positive for cancer, which would at least provide a 443 00:28:14,400 --> 00:28:19,000 Speaker 1: clear way forward. But the results came back negative, sending 444 00:28:19,040 --> 00:28:30,440 Speaker 1: her right back to square one. 445 00:28:31,160 --> 00:28:34,760 Speaker 2: And any normal person would be elated by this news 446 00:28:34,920 --> 00:28:39,200 Speaker 2: such a relief, But I collapsed in every which way 447 00:28:39,280 --> 00:28:42,720 Speaker 2: because I just couldn't believe that this was my life. 448 00:28:42,960 --> 00:28:46,760 Speaker 2: Number one, I was praying for cancer. That's unheard of. 449 00:28:47,440 --> 00:28:51,200 Speaker 2: And number two, I'm now devastated that I don't have 450 00:28:51,320 --> 00:28:55,120 Speaker 2: cancer because it means that I'm stuck with this horrible diagnosis. 451 00:28:55,760 --> 00:28:58,880 Speaker 2: And I lost it. I totally lost it. That's when 452 00:28:58,880 --> 00:29:01,480 Speaker 2: I went to my doctor's and I said, enough is enough. 453 00:29:01,960 --> 00:29:05,520 Speaker 2: I have been through this every day, every hour a 454 00:29:05,600 --> 00:29:09,000 Speaker 2: week or asleep for the last eight nine months. I 455 00:29:09,080 --> 00:29:12,520 Speaker 2: need a break. I can't do this anymore. And so 456 00:29:12,600 --> 00:29:17,000 Speaker 2: I planned a trip to all of the places that 457 00:29:17,040 --> 00:29:18,120 Speaker 2: make me super happy. 458 00:29:18,360 --> 00:29:18,600 Speaker 1: You know. 459 00:29:18,840 --> 00:29:20,960 Speaker 2: I was like, I'm going to go to Dubai, I'm 460 00:29:21,000 --> 00:29:23,480 Speaker 2: going to go to Bombay where I had these amazing 461 00:29:23,520 --> 00:29:25,800 Speaker 2: memories from being an actress. I'm going to go to 462 00:29:25,800 --> 00:29:28,920 Speaker 2: my country, Bangladesh. And I planned it with the blessings 463 00:29:28,920 --> 00:29:30,920 Speaker 2: of my doctor. They were not happy about it, but 464 00:29:30,960 --> 00:29:35,800 Speaker 2: they understood that I needed this spiritually, emotionally, psychologically. 465 00:29:36,840 --> 00:29:39,800 Speaker 1: When she came up with the idea to go on 466 00:29:39,880 --> 00:29:44,400 Speaker 1: this healing quest, yeah I was so against it. All right, 467 00:29:45,320 --> 00:29:48,800 Speaker 1: take me to what her argument was for it and 468 00:29:49,040 --> 00:29:50,720 Speaker 1: your argument against it. 469 00:29:51,560 --> 00:29:55,479 Speaker 4: Her argument was, again it's a healing quest, that it 470 00:29:55,520 --> 00:29:58,240 Speaker 4: was the stress of life that was getting to her. 471 00:29:58,600 --> 00:30:01,680 Speaker 4: My argument is, like God remain me happens, what are 472 00:30:01,720 --> 00:30:03,479 Speaker 4: you going to do? And she's like, well, there's doctors 473 00:30:03,480 --> 00:30:06,160 Speaker 4: out there, but it's like you have like a specialty 474 00:30:06,240 --> 00:30:08,560 Speaker 4: doctor that you need, Like it's doesn't make any sense. 475 00:30:08,640 --> 00:30:11,960 Speaker 4: But she bucked it, and then the universe said otherwise. 476 00:30:12,920 --> 00:30:16,280 Speaker 2: The night before I was supposed to leave for my trip, 477 00:30:16,960 --> 00:30:20,280 Speaker 2: I was informed that my white blood cell count was 478 00:30:20,440 --> 00:30:23,160 Speaker 2: so low because of the chemo that I had been undergoing, 479 00:30:23,720 --> 00:30:26,240 Speaker 2: that if I even caught a cold or got something 480 00:30:26,280 --> 00:30:30,200 Speaker 2: like diarrhea, like ninety five percent chance I would die. 481 00:30:30,320 --> 00:30:33,680 Speaker 2: And so they basically said me going it would be 482 00:30:33,760 --> 00:30:36,120 Speaker 2: going against medical advice, and that I needed to sign 483 00:30:36,160 --> 00:30:38,320 Speaker 2: all these papers and they were like begging me not 484 00:30:38,440 --> 00:30:41,200 Speaker 2: to go, and so I had to cancel my trip. 485 00:30:41,640 --> 00:30:44,440 Speaker 2: And on top of that, I had a relapse, so 486 00:30:44,520 --> 00:30:46,600 Speaker 2: I was instead of getting on a plane to go 487 00:30:46,640 --> 00:30:48,840 Speaker 2: to all these places I wanted to go to, I 488 00:30:48,880 --> 00:30:52,280 Speaker 2: was in a hospital getting treatment. And when I came home, 489 00:30:52,840 --> 00:30:56,120 Speaker 2: I said, I don't want to live like this anymore. 490 00:30:56,800 --> 00:30:59,160 Speaker 2: I don't want to live this kind of life anymore. 491 00:31:00,000 --> 00:31:05,400 Speaker 2: Looked into places that did euthanasia around the world, and 492 00:31:06,600 --> 00:31:09,560 Speaker 2: before I committed to anything, I thought about my mom 493 00:31:10,040 --> 00:31:12,560 Speaker 2: and all the loss that she experienced in her life, 494 00:31:13,440 --> 00:31:15,520 Speaker 2: and what this would do to her, what this would 495 00:31:15,560 --> 00:31:18,760 Speaker 2: do to my sister and people who looked. 496 00:31:18,560 --> 00:31:22,440 Speaker 1: Up to me at that point desperate for some kind 497 00:31:22,480 --> 00:31:25,720 Speaker 1: of relief, so my returned to a spiritual healer in 498 00:31:25,800 --> 00:31:30,200 Speaker 1: Boston for guidance on navigating the mental toll of her disease. 499 00:31:31,480 --> 00:31:34,800 Speaker 2: And he told me something that was so simple but 500 00:31:35,000 --> 00:31:38,160 Speaker 2: stuck with me, and to this day I still remember it. 501 00:31:38,960 --> 00:31:42,120 Speaker 2: He told me that sometimes things have to get so 502 00:31:42,600 --> 00:31:46,800 Speaker 2: bad before they get better. And I really took that 503 00:31:46,840 --> 00:31:51,240 Speaker 2: to heart. And the next day I was crowned Miss Bangladesh, 504 00:31:51,320 --> 00:31:52,440 Speaker 2: USA twenty fifty. 505 00:31:53,640 --> 00:31:55,760 Speaker 1: Oh my goodness. 506 00:31:55,600 --> 00:31:59,000 Speaker 2: You can't make this stuff up. If so mental, that 507 00:31:59,280 --> 00:32:00,000 Speaker 2: is incredible. 508 00:32:00,680 --> 00:32:03,680 Speaker 1: A bit of guidance and then some well deserved recognition 509 00:32:03,920 --> 00:32:08,960 Speaker 1: from the virtual competition. That little boost of optimism and 510 00:32:08,960 --> 00:32:14,760 Speaker 1: clarity reignited Samaira's motivation to continue searching for answers. After 511 00:32:14,880 --> 00:32:18,960 Speaker 1: testing negative for cancer, she embraced her clinical diagnosis of 512 00:32:19,160 --> 00:32:22,800 Speaker 1: NMOSD and realized she needed to assemble a team of 513 00:32:22,880 --> 00:32:26,600 Speaker 1: doctors to help her manage symptoms, including one of the 514 00:32:26,680 --> 00:32:31,960 Speaker 1: foremost nmost experts in the country, doctor Leevy do you 515 00:32:32,040 --> 00:32:36,240 Speaker 1: remember meeting her initially and where she was in terms 516 00:32:36,280 --> 00:32:37,920 Speaker 1: of her health path. 517 00:32:38,760 --> 00:32:40,960 Speaker 3: I met her at a visit when I came to 518 00:32:41,040 --> 00:32:44,520 Speaker 3: Boston for what's called a patient Day, which is where 519 00:32:44,520 --> 00:32:47,600 Speaker 3: we host fifteen twenty twenty five people in a small 520 00:32:47,680 --> 00:32:51,400 Speaker 3: room with just a few speakers on a weekend, just 521 00:32:51,480 --> 00:32:54,280 Speaker 3: to get everybody in the same room, get them networking, 522 00:32:54,360 --> 00:32:56,760 Speaker 3: talking to each other. We give a few lectures, but 523 00:32:56,800 --> 00:32:59,080 Speaker 3: really the point is to get everyone talking to each other. 524 00:33:00,080 --> 00:33:04,680 Speaker 2: He was invited as sort of the guest speaker from Hopkins. 525 00:33:04,720 --> 00:33:07,840 Speaker 2: He was at Hopkins at the time, and of course 526 00:33:07,960 --> 00:33:11,640 Speaker 2: I was starstruck. I mean, this is one of the 527 00:33:12,360 --> 00:33:16,520 Speaker 2: guys in nmost He had done so much in the 528 00:33:16,520 --> 00:33:20,720 Speaker 2: way of research and clinical care and even support. I 529 00:33:20,800 --> 00:33:23,520 Speaker 2: met him and I just hugged him. All I said 530 00:33:23,560 --> 00:33:26,840 Speaker 2: was thank you, thank you, thank you, thank you for 531 00:33:26,920 --> 00:33:30,400 Speaker 2: caring so much about these diseases. He was a hero 532 00:33:30,560 --> 00:33:32,719 Speaker 2: to me, to all of us. I can speak on 533 00:33:32,760 --> 00:33:36,960 Speaker 2: behalf of every patient in our community Animosti in Mogat, 534 00:33:37,440 --> 00:33:40,280 Speaker 2: doctor Levy is our hero. 535 00:33:41,960 --> 00:33:44,640 Speaker 3: When people introduce themselves as Sarah negative and mo there's 536 00:33:44,640 --> 00:33:48,080 Speaker 3: always a little tinge of my doctor doesn't know exactly 537 00:33:48,120 --> 00:33:50,560 Speaker 3: what's going on. But now I'm in this tent. I'm 538 00:33:50,640 --> 00:33:54,720 Speaker 3: under this tent because I have NMO, and although I 539 00:33:54,720 --> 00:33:57,320 Speaker 3: didn't test positive for it, I have nowhere else to go, 540 00:33:57,920 --> 00:33:59,720 Speaker 3: and you guys are going to help me figure this out. 541 00:34:00,040 --> 00:34:02,400 Speaker 3: That's how she presented herself as. 542 00:34:02,280 --> 00:34:05,400 Speaker 2: Symptoms would arise and they'd be like, Okay, let's find 543 00:34:05,480 --> 00:34:08,640 Speaker 2: somebody who knows how to treat this. And over time 544 00:34:08,680 --> 00:34:11,680 Speaker 2: I had a team of quite a few specialists, especially 545 00:34:11,680 --> 00:34:18,160 Speaker 2: in the beginning years, you know, so that looked like neurologists, neuroophthalmologists, urologists, 546 00:34:18,520 --> 00:34:26,880 Speaker 2: guynecologists like an IVF, fertility specialist, rheumatology, physical therapy, and 547 00:34:27,000 --> 00:34:31,440 Speaker 2: last but certainly not least, a psychiatrist. I had to 548 00:34:31,920 --> 00:34:33,520 Speaker 2: prioritize my mental health. 549 00:34:34,760 --> 00:34:38,560 Speaker 1: Finally, with a supportive team of specialists, Samira began testing 550 00:34:38,640 --> 00:34:44,320 Speaker 1: various immunosuppressive therapies and started biannual maintenance psytoscopies to address 551 00:34:44,360 --> 00:34:48,480 Speaker 1: her ongoing bladder issues. Though the process was arduous due 552 00:34:48,520 --> 00:34:52,080 Speaker 1: to the rarity of her disease, the holistic care eventually 553 00:34:52,120 --> 00:34:55,960 Speaker 1: paid off. Over the next few years. Her eyesight returned, 554 00:34:56,280 --> 00:35:00,279 Speaker 1: and her flare ups and hospitalizations became less frequent and 555 00:35:00,360 --> 00:35:04,640 Speaker 1: less severe. She had more energy to restore normalcy and 556 00:35:04,760 --> 00:35:08,440 Speaker 1: dedicate time to her foundation, which she started during the 557 00:35:08,480 --> 00:35:10,880 Speaker 1: onset of her NMOSD symptoms. 558 00:35:12,200 --> 00:35:16,759 Speaker 2: The Samaira Foundation, also known as TSF, is now ten 559 00:35:16,840 --> 00:35:22,560 Speaker 2: years old. We are a global organization nonprofit organization dedicated 560 00:35:22,600 --> 00:35:27,880 Speaker 2: to raising awareness of NMOST which is the disease I have, MOGAD, 561 00:35:27,920 --> 00:35:31,440 Speaker 2: which is an adjacent disease, and other rare neuroimmune conditions. 562 00:35:31,920 --> 00:35:36,640 Speaker 2: We're super passionate about building communities of support. We fund 563 00:35:36,719 --> 00:35:42,160 Speaker 2: research fellowships, journal publications, and of course advocate on behalf 564 00:35:42,160 --> 00:35:47,560 Speaker 2: of patients. My favorite part about our organization is that 565 00:35:48,280 --> 00:35:52,840 Speaker 2: diversity is a big part of us. It's a superpower 566 00:35:52,880 --> 00:36:00,799 Speaker 2: for us. We are truly patient led, patient powered, science driven, therapy, agnostic, 567 00:36:01,680 --> 00:36:04,280 Speaker 2: and really just trying to do things differently. 568 00:36:05,320 --> 00:36:08,719 Speaker 1: So ten years in, what is your life like? 569 00:36:09,520 --> 00:36:14,520 Speaker 2: Beautiful? It's so bright, it's so colorful, it's so amazing. 570 00:36:15,120 --> 00:36:17,920 Speaker 2: I feel like the luckiest person in the entire world. 571 00:36:18,680 --> 00:36:22,480 Speaker 2: I can't believe this is my life sometimes, and it's 572 00:36:22,520 --> 00:36:24,960 Speaker 2: so interesting because people who have known me forever and 573 00:36:25,000 --> 00:36:27,920 Speaker 2: ever and ever will say, look, Samaira, you got the 574 00:36:28,000 --> 00:36:31,080 Speaker 2: life that you ultimately wanted. You know, you get to 575 00:36:31,120 --> 00:36:36,239 Speaker 2: wear beautiful clothes, travel the world, make people happy, have 576 00:36:36,320 --> 00:36:37,960 Speaker 2: a platform. 577 00:36:38,200 --> 00:36:42,560 Speaker 4: I think every successful event that she does where it 578 00:36:42,600 --> 00:36:49,360 Speaker 4: includes patients is great. It's overwhelmingly nice to see because 579 00:36:49,920 --> 00:36:52,280 Speaker 4: these patients look to her. I was like, she sees 580 00:36:52,400 --> 00:36:55,359 Speaker 4: us right, like how you said, Doctor Leevy made her 581 00:36:55,400 --> 00:36:59,200 Speaker 4: feel seen. That's how she makes others feel seen who 582 00:36:59,239 --> 00:36:59,719 Speaker 4: have this. 583 00:36:59,760 --> 00:37:03,440 Speaker 1: Can is You've changed so many lives because when I 584 00:37:03,520 --> 00:37:07,000 Speaker 1: think of you at the age of twenty five being 585 00:37:07,040 --> 00:37:10,759 Speaker 1: told you better hope it's cancer, because cancer has the 586 00:37:10,840 --> 00:37:14,520 Speaker 1: research and the funding, there's the attention on it, so 587 00:37:14,560 --> 00:37:19,200 Speaker 1: it's better than this incredibly rare condition. But you've altered that. 588 00:37:20,000 --> 00:37:22,280 Speaker 1: How much to date have you raised for research? 589 00:37:23,120 --> 00:37:26,960 Speaker 2: In the last ten years, we've raised about five million dollars. 590 00:37:27,719 --> 00:37:32,279 Speaker 2: A million has gone directly towards research, and a lot 591 00:37:32,320 --> 00:37:35,680 Speaker 2: of the other funds have gone towards organizing patient days. 592 00:37:35,760 --> 00:37:40,759 Speaker 2: We've done these now in three different countries, twelve different cities, 593 00:37:41,520 --> 00:37:46,560 Speaker 2: also different patient programming. I'm very passionate about knowledge being 594 00:37:46,760 --> 00:37:49,920 Speaker 2: a source of power for patients and it being an 595 00:37:49,960 --> 00:37:57,120 Speaker 2: empowerment tool. So we invest a lot in patient education, webinars, podcasts, 596 00:37:57,280 --> 00:37:58,360 Speaker 2: patient stories. 597 00:37:59,200 --> 00:38:05,280 Speaker 1: So yeah, while NMOSD can often be devastating for patients, 598 00:38:05,760 --> 00:38:09,120 Speaker 1: the work Samira is leading with the Foundation, along with 599 00:38:09,200 --> 00:38:14,320 Speaker 1: the ongoing research worldwide, gives doctor Levy optimism about future 600 00:38:14,360 --> 00:38:19,160 Speaker 1: outcomes for the condition. If you were to wave a 601 00:38:19,239 --> 00:38:22,799 Speaker 1: magic wand and you had unlimited funds, where would you 602 00:38:22,920 --> 00:38:25,680 Speaker 1: put them right now? In terms of research and why? 603 00:38:26,440 --> 00:38:30,600 Speaker 3: I think the most exciting air of research now is 604 00:38:30,640 --> 00:38:33,480 Speaker 3: to try to I don't want to put too much 605 00:38:33,520 --> 00:38:36,680 Speaker 3: emphasis on the C word cure, but I really do 606 00:38:36,800 --> 00:38:39,920 Speaker 3: believe that we're at the point scientifically that we can 607 00:38:39,960 --> 00:38:43,360 Speaker 3: think about how to turn the immune system off to 608 00:38:43,640 --> 00:38:48,120 Speaker 3: this one protein acuporn four. When the disease started, the 609 00:38:48,160 --> 00:38:52,680 Speaker 3: immune system turned on and was told that acaporn four 610 00:38:52,760 --> 00:38:56,080 Speaker 3: is bad. And now we have a lot more technology 611 00:38:56,280 --> 00:39:00,240 Speaker 3: and understanding of how that process started that we're able 612 00:39:00,320 --> 00:39:03,960 Speaker 3: to in mouse models turn that immune reaction off just 613 00:39:04,040 --> 00:39:07,480 Speaker 3: to aquaborne for wow. So I think that that's the 614 00:39:07,480 --> 00:39:09,759 Speaker 3: most exciting area of research. That's where I would put 615 00:39:09,760 --> 00:39:12,560 Speaker 3: my money because you can imagine a patient comes in 616 00:39:12,920 --> 00:39:15,360 Speaker 3: right now, I tell them, yes, we have great drugs, 617 00:39:15,400 --> 00:39:17,040 Speaker 3: but you have to be on them for life. We 618 00:39:17,120 --> 00:39:19,360 Speaker 3: have to suppress your immune system to some degree or 619 00:39:19,360 --> 00:39:22,239 Speaker 3: another for the rest of your life. But if I 620 00:39:22,239 --> 00:39:24,640 Speaker 3: could tell them, look, we know what turned your immune 621 00:39:24,640 --> 00:39:26,960 Speaker 3: system on, and now we have this treatment that's just 622 00:39:27,000 --> 00:39:29,319 Speaker 3: going to turn it right off again, and then you 623 00:39:29,360 --> 00:39:32,319 Speaker 3: don't need to take immune suppressant medications for the rest 624 00:39:32,360 --> 00:39:34,600 Speaker 3: of your life, that would be really cool. 625 00:39:35,960 --> 00:39:41,759 Speaker 1: Are you cautiously optimistic that the C word cure is 626 00:39:41,800 --> 00:39:43,560 Speaker 1: on the horizon within your lifetime? 627 00:39:44,160 --> 00:39:47,279 Speaker 3: Within my lifetime, yes, I wouldn't make promises about five 628 00:39:47,320 --> 00:39:50,799 Speaker 3: even ten years, but I think in the future, yes, 629 00:39:51,040 --> 00:39:52,640 Speaker 3: it's going to be a real thing. 630 00:39:54,239 --> 00:39:58,160 Speaker 1: And what would you hope people take away from Samira's story. 631 00:39:59,040 --> 00:40:01,240 Speaker 4: I think that it's a its story in the sense 632 00:40:01,280 --> 00:40:05,040 Speaker 4: that it has its trials and tribulation, right, everything was 633 00:40:05,080 --> 00:40:09,200 Speaker 4: not peachy and perfect, and that she still pushed through, 634 00:40:09,640 --> 00:40:15,120 Speaker 4: both personally and professionally to get to a place where 635 00:40:15,239 --> 00:40:22,080 Speaker 4: there's inclusivity and openness about understanding not just her rare disease, 636 00:40:22,120 --> 00:40:25,799 Speaker 4: but there are so many other rare illnesses and conditions 637 00:40:25,840 --> 00:40:29,480 Speaker 4: that haven't been spoken about. So it just allowed them 638 00:40:29,520 --> 00:40:34,759 Speaker 4: to break open a door for people who thought they 639 00:40:34,800 --> 00:40:38,279 Speaker 4: were lost and had no way of connecting and give 640 00:40:38,320 --> 00:40:39,279 Speaker 4: them that platform. 641 00:40:39,760 --> 00:40:42,399 Speaker 2: You really never know how life is going to turn out, 642 00:40:43,080 --> 00:40:47,560 Speaker 2: and so just keep going, keep going, even when times 643 00:40:47,560 --> 00:40:52,560 Speaker 2: are so hard, because the other side may be completely different, 644 00:40:52,640 --> 00:40:54,839 Speaker 2: of course, but it could be so much better than 645 00:40:54,880 --> 00:40:58,759 Speaker 2: what you imagined or what you wanted for yourself. And 646 00:40:58,800 --> 00:41:03,080 Speaker 2: I say this at every pacey I organize that truly, 647 00:41:03,160 --> 00:41:07,719 Speaker 2: we cannot let our diseases and our diagnoses define us, 648 00:41:08,000 --> 00:41:12,080 Speaker 2: or consume us or limit us. There's so many other 649 00:41:12,200 --> 00:41:16,200 Speaker 2: aspects to our lives than the diseases that were afflicted with, 650 00:41:17,239 --> 00:41:21,480 Speaker 2: and dreams and aspirations may change, but they may actually 651 00:41:21,560 --> 00:41:25,200 Speaker 2: end up being far greater. Lean in on your community, 652 00:41:25,360 --> 00:41:28,600 Speaker 2: lean in on those who love you and who you love. 653 00:41:29,239 --> 00:41:31,920 Speaker 2: You're never burdening people. I had to learn that for myself. 654 00:41:31,960 --> 00:41:34,759 Speaker 2: It took so long for me to learn that. But 655 00:41:35,080 --> 00:41:38,160 Speaker 2: we have to go through things together. This life is 656 00:41:38,200 --> 00:41:40,400 Speaker 2: too crazy to deal with these things alone. 657 00:41:42,160 --> 00:41:45,200 Speaker 1: If you want to learn more about NMOSD, you can 658 00:41:45,280 --> 00:41:50,399 Speaker 1: visit the Samyra Foundation website at Samirafoundation dot org. And 659 00:41:50,640 --> 00:41:53,160 Speaker 1: if you know someone who might benefit from the information 660 00:41:53,200 --> 00:41:56,560 Speaker 1: in this episode, we encourage you to please share it. 661 00:41:57,400 --> 00:42:01,120 Speaker 2: My name is Samayrah Ahmed. I am the founder and 662 00:42:01,160 --> 00:42:05,320 Speaker 2: executive director of the Samaira Foundation, and over the last 663 00:42:05,360 --> 00:42:09,279 Speaker 2: ten years, I have been living with a rare autoimmune 664 00:42:09,280 --> 00:42:15,400 Speaker 2: disease called neuromylitis optica spectrum disorder, also known as NMOSD. 665 00:42:17,480 --> 00:42:20,799 Speaker 1: On next week's episode of Symptomatic, tune in for a 666 00:42:20,840 --> 00:42:24,319 Speaker 1: brand new episode of Symptomatic house calls. This time, we're 667 00:42:24,400 --> 00:42:27,319 Speaker 1: checking in with Lauren from case number sixteen. If you 668 00:42:27,360 --> 00:42:31,320 Speaker 1: haven't listened to this episode, we highly recommend you do so. Prior, 669 00:42:32,040 --> 00:42:36,040 Speaker 1: Lauren began experiencing severe pain that could not be explained 670 00:42:36,040 --> 00:42:40,000 Speaker 1: away by her professional dancing career. Her body was slowly 671 00:42:40,040 --> 00:42:44,120 Speaker 1: betraying her. The movements that were once effortless soon became 672 00:42:44,239 --> 00:42:48,960 Speaker 1: nearly impossible. After fifteen years of searching for relief, Lauren 673 00:42:49,080 --> 00:42:53,239 Speaker 1: was finally diagnosed with soriatic arthritis. Join us as we 674 00:42:53,360 --> 00:42:57,200 Speaker 1: check in with Lauren, looking back at everything she sacrificed 675 00:42:57,520 --> 00:43:00,400 Speaker 1: on her way to re establishing her life and gaining 676 00:43:00,440 --> 00:43:04,759 Speaker 1: back control. As always, we would love to hear from you. 677 00:43:05,120 --> 00:43:07,719 Speaker 1: Send us your thoughts on this episode or share a 678 00:43:07,760 --> 00:43:12,800 Speaker 1: medical mystery of your own at Symptomatic at iHeartMedia dot com, 679 00:43:13,160 --> 00:43:17,239 Speaker 1: and please rate and review Symptomatic wherever you get your podcasts. 680 00:43:17,600 --> 00:43:22,040 Speaker 1: We'll see you next time. Until then, be well. Symptomatic 681 00:43:22,160 --> 00:43:25,479 Speaker 1: is a production of Ruby Studio from iHeartMedia. Our show 682 00:43:25,520 --> 00:43:29,120 Speaker 1: is hosted by me Lauren breg Pacheco. Executive producers are 683 00:43:29,200 --> 00:43:33,040 Speaker 1: Matt Romano and myself. Our EP of Post Production is 684 00:43:33,120 --> 00:43:37,800 Speaker 1: James Foster. Our Supervising Producer is Cierra Kaiser. Our writers 685 00:43:37,880 --> 00:43:41,320 Speaker 1: are John Erwin and Diana Davis, and our editor is 686 00:43:41,360 --> 00:43:42,120 Speaker 1: Cierra Spreen.