WEBVTT - Case #24: Sumaira 0:00:03.320 --> 0:00:07.720 Movie. 0:00:08.800 --> 0:00:12.520 I went from being fine to walked into a wall, 0:00:12.800 --> 0:00:16.400 collapsed in my office, lost vision in both of my eyes, 0:00:16.520 --> 0:00:19.119 and couldn't feel half of my body. That's when we 0:00:19.160 --> 0:00:22.080 all decided, I need to go to the hospital right now. 0:00:22.680 --> 0:00:25.920 It's not something that's outwardly visible, and so they'll end 0:00:26.000 --> 0:00:29.479 up often in the emergency room because the symptoms are severe. 0:00:30.040 --> 0:00:33.479 My older sister like asked the doctor is she going 0:00:33.560 --> 0:00:36.360 to be okay? And the doctor had no response. 0:00:37.080 --> 0:00:40.240 I felt like I was going to die, and all 0:00:40.280 --> 0:00:43.280 I could think about was like, I don't want my 0:00:43.360 --> 0:00:44.840 mom to lose another kid. 0:00:52.880 --> 0:00:56.480 How terrifying would it be to fight an unknown enemy, 0:00:57.040 --> 0:01:00.840 one you didn't recognize and didn't see coming. What if 0:01:00.880 --> 0:01:04.960 that enemy was coming from within a disease that even 0:01:05.080 --> 0:01:10.720 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:10.840 --> 0:01:15.480 some chronic illness, and many struggle for an accurate diagnosis. 0:01:16.560 --> 0:01:23.200 These are their stories. I'm Lauren Bret Pacheco, and this 0:01:23.640 --> 0:01:42.240 is symptomatic. Meeting Samayra Ahmed, You're immediately struck by her 0:01:42.360 --> 0:01:46.800 radiant smile and the passion that fuels it. I did 0:01:46.800 --> 0:01:50.040 go down the rabbit hole. Sumyra is a beautiful name, 0:01:50.160 --> 0:01:53.880 thank you, but it has a very fitting meaning as 0:01:53.920 --> 0:01:58.240 well for you. It translates as a famous woman, a 0:01:58.240 --> 0:02:03.040 woman who entertains a successful woman. And so I thought, 0:02:03.080 --> 0:02:07.360 how did your parents know to name you Samyra? Oh 0:02:07.400 --> 0:02:08.200 my god, I. 0:02:08.120 --> 0:02:12.160 Am shook because my entire thirty five years of existence, 0:02:13.040 --> 0:02:17.600 I was sort of under the impression that Samayra stems 0:02:17.760 --> 0:02:22.919 from the Arabic word samra, which means brown skin. 0:02:23.680 --> 0:02:28.560 That did come up. But it's a successful, celebrated, famous woman, 0:02:28.760 --> 0:02:30.040 a woman who entertains. 0:02:30.760 --> 0:02:31.760 I have the chills. 0:02:32.360 --> 0:02:34.760 I have the chills. So you'll have to check in 0:02:34.800 --> 0:02:36.800 with your parents and see if they knew that when 0:02:36.800 --> 0:02:39.960 they named you. For people who don't know you, How 0:02:40.000 --> 0:02:42.960 would you describe yourself passionate? 0:02:43.600 --> 0:02:46.040 I do think I'm sort of a natural born leader. 0:02:46.280 --> 0:02:50.000 I always have been since I was a kid. Advocacy 0:02:50.040 --> 0:02:53.000 has always been a part of my life in different forms. 0:02:53.040 --> 0:02:58.480 So I believe in community. I'm a very community oriented person. 0:03:00.000 --> 0:03:04.040 Describe myself as kind of a citizen of the world. 0:03:04.560 --> 0:03:11.520 I am so fascinated by cultures, languages, different countries, how 0:03:11.600 --> 0:03:13.840 people live, just people in general. 0:03:15.120 --> 0:03:18.840 The youngest of three sisters, Samira, is just sixteen months 0:03:18.880 --> 0:03:22.160 younger than her sister Sabrina, and they were raised almost 0:03:22.240 --> 0:03:23.000 like twins. 0:03:23.440 --> 0:03:27.359 I think because we're close in age, it was easier 0:03:27.440 --> 0:03:31.600 for us to relate more. We dance, We went to 0:03:31.760 --> 0:03:37.080 dance school together, we went to singing classes together, Sunday school, 0:03:37.400 --> 0:03:39.200 and then you know, we went to the same high school. 0:03:39.400 --> 0:03:43.320 So we had a very close relationship in the sense 0:03:43.400 --> 0:03:44.760 that we did do a lot together. 0:03:45.440 --> 0:03:48.800 For context, my parents immigrated to the US from a 0:03:48.840 --> 0:03:52.960 small country in Asia called Bangladesh and they moved to 0:03:53.000 --> 0:03:55.440 New Jersey, which is where I was born and brought up. 0:03:55.960 --> 0:03:59.480 And in New Jersey, we were very fortunate to have 0:04:00.200 --> 0:04:05.240 a very deep rooted Bengali community. So these were folks 0:04:05.280 --> 0:04:08.600 who immigrated to the US like my parents, and their 0:04:08.680 --> 0:04:12.360 children were born in the US like myself, and to 0:04:12.480 --> 0:04:16.560 keep our culture alive, they developed this community that to 0:04:16.560 --> 0:04:19.760 this day is still standing so strong. So part of 0:04:19.800 --> 0:04:24.120 that included a dance school, a local dance school, a 0:04:24.160 --> 0:04:25.440 singing school. 0:04:26.320 --> 0:04:31.839 This community is where Samaira fell in love with performing, singing, dancing, acting, 0:04:31.960 --> 0:04:34.800 all of it inspired by the Bollywood movies she grew 0:04:34.880 --> 0:04:38.479 up watching with her family. She dreamed of becoming a star. 0:04:39.080 --> 0:04:41.680 She even moved to India during high school to study 0:04:41.680 --> 0:04:47.240 performing arts, displaying an adventurous bravery that would soon prove invaluable. 0:04:47.839 --> 0:04:51.520 Despite the success of her budding acting career, Samyra decided 0:04:51.560 --> 0:04:55.760 to prioritize her education and returned home to attend college. 0:04:56.640 --> 0:05:00.960 What is amazing to me is that you had lived 0:05:01.680 --> 0:05:07.240 a very international, very full life at such an early age, 0:05:07.360 --> 0:05:11.360 and there were no health issues even now looking back 0:05:11.880 --> 0:05:16.320 at your childhood, nothing that would have been a red flag. No, 0:05:16.800 --> 0:05:20.800 I was so healthy. So then take me to when 0:05:21.320 --> 0:05:25.320 your symptoms began. You were working full time living in Boston. 0:05:25.960 --> 0:05:29.440 When did you begin to notice something wasn't quite right. 0:05:30.440 --> 0:05:34.479 So I had taken a break from acting when I 0:05:34.480 --> 0:05:37.880 went to university and a few years after that. So 0:05:37.960 --> 0:05:40.840 this was now the spring of twenty fourteen, when I 0:05:40.880 --> 0:05:45.000 was twenty four. I had oral surgery, very standard. I 0:05:45.040 --> 0:05:49.720 got four of my impacted wisdom teeth extracted, and then 0:05:50.000 --> 0:05:54.520 following the procedure, I had an infection, which obviously was uncomfortable, 0:05:54.600 --> 0:05:56.520 but still I didn't really think much of it. I 0:05:56.560 --> 0:05:59.560 went to the doctor. They fixed it with dressing, an 0:05:59.600 --> 0:06:02.400 antibiotics and all of that stuff. So I was not 0:06:02.480 --> 0:06:05.840 so worried about it. But two weeks after that infection, 0:06:06.960 --> 0:06:12.880 I randomly lost vision in my right eye and it 0:06:13.080 --> 0:06:17.440 started with just like a black, little circle, but then 0:06:17.520 --> 0:06:20.960 over the next few days just kept expanding and expanding. 0:06:21.480 --> 0:06:23.440 Now the irony in all of this is that I 0:06:23.560 --> 0:06:27.760 was working in ophthalmology at the time, Thank God, because 0:06:28.200 --> 0:06:32.159 I immediately approached some of the doctors that I worked with 0:06:32.680 --> 0:06:35.240 and I said, hey, I can't see out of my 0:06:35.360 --> 0:06:39.280 right eye. Immediately They're like, oh, let's check your corneas. 0:06:40.000 --> 0:06:43.039 Everything was fine and structurally, and then I had something 0:06:43.080 --> 0:06:45.880 called a visual field test, and this is where they 0:06:45.920 --> 0:06:49.159 were able to see that I had lost about sixty 0:06:49.200 --> 0:06:52.120 percent of my vision in my right eye. So my 0:06:52.200 --> 0:06:54.520 field of vision just like kind of closed in. 0:06:55.600 --> 0:06:58.320 That must have been terrifying. 0:06:59.279 --> 0:07:03.320 It's so fun, Lauren. I wasn't afraid at all, because 0:07:03.960 --> 0:07:06.279 I was like, oh, I have an eye issue. I 0:07:06.360 --> 0:07:09.920 work with nine eye doctors, they all are affiliated with Harvard. 0:07:10.040 --> 0:07:12.640 I'm gonna be okay, they'll figure this out. So I 0:07:12.760 --> 0:07:15.600 wasn't scared at all. In fact, I wasn't taking it 0:07:15.640 --> 0:07:19.080 as seriously as maybe I should have. So there was 0:07:19.200 --> 0:07:21.960 only so much that they could do in the clinic, 0:07:22.520 --> 0:07:24.640 so they sent me to the hospital to get an 0:07:24.760 --> 0:07:27.040 MRI because they were like, they think that this might 0:07:27.080 --> 0:07:29.280 be something neurologically related. 0:07:30.160 --> 0:07:37.120 So that MRI revealed inflammation. Just explain how they gave 0:07:37.160 --> 0:07:38.520 you the results of that MRI. 0:07:39.480 --> 0:07:43.440 Yeah, it's so funny. Fourth of July twenty fourteen, I 0:07:43.520 --> 0:07:47.320 show up to mass ionear with my weekend bag. I'm like, 0:07:47.320 --> 0:07:48.880 all right, I'm going to get this MRI and go 0:07:48.920 --> 0:07:52.440 to my fourth of July barbecue. So naive and I 0:07:52.480 --> 0:07:53.840 thought I was going to be like in and out, 0:07:54.000 --> 0:07:57.760 you know, super easy. And what was supposed to be 0:07:57.960 --> 0:08:01.840 like a two three hour appointment turned into fourteen hours 0:08:01.880 --> 0:08:06.080 in the emergency room, having seen specialist after specialists in 0:08:06.240 --> 0:08:08.680 all of whom are just kind of scratching their heads 0:08:08.760 --> 0:08:14.080 wondering why is this young, otherwise healthy woman rapidly losing 0:08:14.200 --> 0:08:18.680 vision hour by hour? And when I came out of 0:08:18.720 --> 0:08:22.920 the MRI, I was greeted by a couple of neuroophthalmologists 0:08:23.800 --> 0:08:28.200 and they said, Samiri, you have lost vision because you 0:08:28.280 --> 0:08:32.640 have inflammation on the optic nerve in your brain. And 0:08:33.520 --> 0:08:38.840 my initial reaction was no, I don't because you just 0:08:38.960 --> 0:08:42.320 cannot process something like that at such a young age 0:08:42.360 --> 0:08:46.080 when you're perfectly healthy. Otherwise somebody's telling you you have 0:08:46.160 --> 0:08:49.080 inflammation in your brain and you just don't believe it 0:08:49.120 --> 0:08:52.000 because at twenty four years old, you think you're invincible. 0:08:52.480 --> 0:08:54.320 So I just denied it. I was like, no, that's 0:08:54.360 --> 0:08:57.559 not mine. You must be mistaken, and they're like, no, no, no, 0:08:57.880 --> 0:08:58.440 here it is. 0:08:59.240 --> 0:09:02.480 Did they row out ideas as to what could be 0:09:02.600 --> 0:09:03.120 causing it. 0:09:03.800 --> 0:09:07.600 So I was admitted right away into adult neurology and 0:09:07.640 --> 0:09:11.280 they started loading me up with ivy steroids and I was, 0:09:11.400 --> 0:09:13.320 of course complying and all that, but you know, you 0:09:13.320 --> 0:09:15.520 have questions. You're like, what is happening? Why am I 0:09:15.600 --> 0:09:18.200 getting this? And so basically what was explained to me 0:09:18.320 --> 0:09:22.920 during the onset was that I had an adiopathic case 0:09:23.120 --> 0:09:26.600 of optic neuritis, which is vision loss duit to inflammation, 0:09:27.280 --> 0:09:29.880 and that my vision would return within three months to 0:09:29.960 --> 0:09:33.720 a year. They said, don't worry, you're going to be fine. 0:09:34.400 --> 0:09:37.480 You do have a sixteen percent chance of developing MS 0:09:37.559 --> 0:09:40.080 at some point in your life, but it's such a 0:09:40.080 --> 0:09:43.440 low percentage. We're pretty confident you're going to get your 0:09:43.520 --> 0:09:46.080 vision back and all will be back to normal. When 0:09:46.080 --> 0:09:48.400 I got discharged. They said, just take some vitamin D. 0:09:48.520 --> 0:09:53.640 You're severely vitamin D deficient. So again, at twenty four, 0:09:54.040 --> 0:09:56.959 when all the experts around you are not worried and 0:09:57.000 --> 0:09:59.679 saying you're going to be okay, You're like, okay, I'm 0:09:59.679 --> 0:10:01.600 going to be fine. And I moved on with my 0:10:01.640 --> 0:10:04.280 life even with vision loss. 0:10:04.600 --> 0:10:08.280 Believing these troubles would soon pass. So Mayra returned to 0:10:08.320 --> 0:10:11.960 her normal routine work, family gatherings, and nights out with 0:10:12.040 --> 0:10:15.239 friends until her symptoms quickly resurfaced. 0:10:16.080 --> 0:10:19.400 I turned twenty five just a couple weeks later, and 0:10:19.880 --> 0:10:23.600 I maintain to this day I partied like a rock star, 0:10:23.679 --> 0:10:28.120 as I should have, because you know, twenty five Golden Year, 0:10:28.800 --> 0:10:32.320 and yeah, just a couple no. A week after my 0:10:32.360 --> 0:10:36.000 twenty fifth birthday, I lost vision in both of my eyes. 0:10:36.440 --> 0:10:39.640 I couldn't feel half of my body. Everything felt like 0:10:39.720 --> 0:10:42.720 it was on fire. I was also in some pain, 0:10:43.679 --> 0:10:48.840 severe nausea, and instead of staying home like a normal 0:10:48.880 --> 0:10:52.320 person would when they're not feeling well, I felt safer 0:10:52.760 --> 0:10:56.480 being in my office around all of these doctors. I 0:10:56.520 --> 0:10:58.480 didn't want to be at home alone with all of 0:10:58.480 --> 0:11:05.960 this happening. I was walking or hobbling to my office 0:11:06.000 --> 0:11:09.520 trying to and luckily it was in a populated area, 0:11:10.160 --> 0:11:14.960 and because I couldn't see, I literally walked into a wall, 0:11:15.240 --> 0:11:18.360 bumped my forehead and then I collapsed, and I think 0:11:18.400 --> 0:11:21.160 I did lose consciousness for a few seconds, but it 0:11:21.240 --> 0:11:25.640 was quick because next thing I saw, my boss was like, hello, 0:11:25.679 --> 0:11:28.560 are you okay? And then you know, my coworker was 0:11:28.600 --> 0:11:31.240 there too, and I was just like, I don't think 0:11:31.280 --> 0:11:33.760 I'm okay. And they knew that because they had been 0:11:33.840 --> 0:11:37.200 checking in on me almost every few hours. Now, imagine 0:11:37.360 --> 0:11:39.719 I work with all of these specialists that are at 0:11:39.760 --> 0:11:43.160 Harvard and mess General and they have all the pedigrees 0:11:43.200 --> 0:11:46.240 in the world, and they treat you know, eye problems 0:11:46.280 --> 0:11:49.079 all day, every day of so many kinds. This was 0:11:49.120 --> 0:11:51.680 the first time that they saw something like this, so 0:11:51.800 --> 0:11:54.640 even they were nervous, and seeing the nervousness on my 0:11:54.720 --> 0:11:58.559 boss's face, that was when I started to take this seriously. 0:12:00.480 --> 0:12:03.920 Samayra had not yet shared any details with her family 0:12:04.360 --> 0:12:08.240 about the first episode or the inflammation on her optic nerve. 0:12:08.880 --> 0:12:12.080 She had kept it all to herself. Now, on the 0:12:12.080 --> 0:12:15.120 way to the er, she faced the difficult task of 0:12:15.160 --> 0:12:19.000 sharing this news with her family. Something she had been dreading. 0:12:19.600 --> 0:12:21.800 I didn't tell my family the first episode because I 0:12:21.800 --> 0:12:24.520 didn't want to startle anyone. No one seemed to think 0:12:24.559 --> 0:12:26.560 it was a big deal in the hospital, so I 0:12:26.600 --> 0:12:28.720 was like, I'm not going to worry people for no reason. 0:12:29.360 --> 0:12:31.800 But I was in the ambulance. I called my family. 0:12:32.000 --> 0:12:34.559 I said, you guys need to come to Boston. I 0:12:34.640 --> 0:12:36.000 think something's very wrong. 0:12:36.600 --> 0:12:39.240 At the time, I was like, very fresh in my career, 0:12:39.960 --> 0:12:43.240 and I got the phone call, and it's like a 0:12:43.240 --> 0:12:46.360 little daunting to get a phone call like hey, listen, 0:12:46.480 --> 0:12:50.600 like very nonslotly, and then when she got into it, 0:12:50.640 --> 0:12:54.400 of course more emotionally. I honestly didn't know the extent 0:12:54.440 --> 0:12:58.559 of how detailed of an issue it was. None of 0:12:58.640 --> 0:13:01.480 us knew what it was until you get there and 0:13:01.520 --> 0:13:04.440 you're there for days on end, and that's when it 0:13:04.480 --> 0:13:08.160 becomes more like, Okay, things are getting more real, some 0:13:08.320 --> 0:13:09.320 things out right. 0:13:09.880 --> 0:13:12.960 And within hours everyone was in Boston. This time, I 0:13:12.960 --> 0:13:15.680 could tell that the hospital also was taking it seriously, 0:13:15.760 --> 0:13:18.400 not that they weren't before, but I think they also 0:13:18.520 --> 0:13:21.880 understood that things have evolved, things have progressed. This is 0:13:21.960 --> 0:13:24.960 not what we were dealing with the first time, and 0:13:25.080 --> 0:13:28.840 so I was taken in right away. Four hours of 0:13:28.920 --> 0:13:33.560 imaging twenty vials of blood. I had my first lumbar puncture, 0:13:33.600 --> 0:13:36.720 which was the worst, and I was started on ivy 0:13:36.720 --> 0:13:37.839 steroids right away. 0:13:38.480 --> 0:13:41.679 For people who don't understand, can you just explain what 0:13:41.760 --> 0:13:44.760 a lumbar puncture is and how it feels. 0:13:45.000 --> 0:13:49.600 Oh, yes, it's when they extract with a giant needle 0:13:49.920 --> 0:13:55.000 cerebral spinal fluid from your spine, and it is I mean, 0:13:55.040 --> 0:13:57.920 I have chills talking about it now. I've had it 0:13:57.960 --> 0:13:59.920 twice in my life. It is one of the most 0:14:00.800 --> 0:14:03.640 traumatic things I've ever experienced in my life. 0:14:04.559 --> 0:14:10.520 So take me to your family, going from no knowledge 0:14:10.559 --> 0:14:15.840 that there's a problem to stat it's an emergency. Take 0:14:15.880 --> 0:14:18.160 me to the moment they all are surrounding you. 0:14:19.000 --> 0:14:21.680 I was on a lot of medications because of how 0:14:21.760 --> 0:14:25.040 much pain I was in, So the first time I 0:14:25.120 --> 0:14:31.800 remember seeing them was after my lumbar puncture. I was 0:14:31.920 --> 0:14:35.360 in my room. I was definitely on morphine and I 0:14:35.440 --> 0:14:38.920 woke up from I guess whatever, maybe a nap or 0:14:39.000 --> 0:14:43.840 a medication induced nap, and confused. I could also see 0:14:43.840 --> 0:14:48.560 the look of fear on my mom's face and my 0:14:48.720 --> 0:14:52.800 sister's just kind of trying to understand what was going on. 0:14:53.720 --> 0:14:56.360 It's so interesting. I never really talk about this, so 0:14:56.360 --> 0:14:58.600 if I get worked up, it's because it's sometimes it's 0:14:58.680 --> 0:15:02.120 traumatic to think about. But like, I'm the kind of 0:15:02.200 --> 0:15:06.080 person that it brings me joy to bring joy to 0:15:06.120 --> 0:15:09.960 people's lives, making people smile, making them feel good. This 0:15:10.120 --> 0:15:12.240 is my love language and it has been since I 0:15:12.280 --> 0:15:14.560 was a kid. I never want to be the person 0:15:14.680 --> 0:15:18.480 who is adding stress to somebody's life or making them upset, 0:15:18.680 --> 0:15:21.640 or making them angry or cry. And it was so 0:15:21.800 --> 0:15:26.280 obvious that my family, after all of what we have 0:15:26.400 --> 0:15:32.320 been through separately, was now experiencing another trauma or tragedy 0:15:32.720 --> 0:15:36.040 and it was because of me. So I felt really guilty. 0:15:37.040 --> 0:15:39.239 I'm gonna cry. That breaks my heart. 0:15:40.080 --> 0:15:44.160 Yeah I was. I felt bad because. 0:15:44.960 --> 0:15:47.720 I I didn't want to add more stress to my 0:15:47.880 --> 0:15:49.040 family's lives. 0:15:49.480 --> 0:15:51.760 We had already been through so much. 0:15:53.080 --> 0:15:53.240 And. 0:15:54.760 --> 0:16:00.600 I was thinking about I had a brother passed away 0:16:00.640 --> 0:16:05.360 when he was three weeks old, and he passed before 0:16:05.400 --> 0:16:07.680 I was born, but I have like this crazy connection 0:16:07.800 --> 0:16:10.960 to him, and all I could think about was. 0:16:10.840 --> 0:16:14.040 Like, I don't want my mom to lose another kid. 0:16:17.880 --> 0:16:21.600 Sabrina, seeing your little sister that way in the hospital. 0:16:21.960 --> 0:16:25.120 What were your greatest fears and concerns at the time 0:16:25.640 --> 0:16:29.640 and what was being expressed by the family not in 0:16:29.680 --> 0:16:30.680 front of Samira. 0:16:31.400 --> 0:16:36.640 I think the unknown, right, like not knowing what this was, 0:16:37.480 --> 0:16:41.080 what treatment she needed, the effects of the treatment, how 0:16:41.120 --> 0:16:43.400 if it's going to be positive negative? Like you know, 0:16:43.480 --> 0:16:46.440 it was all trial and error. I think one of 0:16:46.960 --> 0:16:49.320 the things that happened to my older sister like asked 0:16:49.360 --> 0:16:52.360 the doctor is she going to be okay? And the 0:16:52.440 --> 0:16:55.600 doctor had no response. That's when it was like, okay, 0:16:56.160 --> 0:16:57.920 no response is not a good response. 0:17:00.560 --> 0:17:04.000 Within a few weeks, Samaira went from a healthy twenty 0:17:04.000 --> 0:17:08.080 four year old enjoying her life to rapidly losing her vision. 0:17:08.680 --> 0:17:12.399 Inflammation was spreading through her brain as doctors struggled to 0:17:12.400 --> 0:17:16.240 stabilize her. What are the doctors telling you at this moment. 0:17:17.000 --> 0:17:18.919 At that point, it was the first time I had 0:17:18.960 --> 0:17:21.600 heard the name of my diagnosis. So they told me 0:17:21.680 --> 0:17:26.400 that I was suspected to have neuromi lightest optica. They 0:17:26.440 --> 0:17:29.080 don't know why it happens. At the time, there was 0:17:29.160 --> 0:17:33.560 no approved therapy, so they would have to try different treatments. 0:17:34.240 --> 0:17:37.919 They told me that there was no cure and that 0:17:38.000 --> 0:17:42.159 it was very rare. And I had two questions for 0:17:42.200 --> 0:17:44.639 them as soon as I heard all of this, which 0:17:44.800 --> 0:17:48.280 was am I going to die from this? To which 0:17:48.320 --> 0:17:53.040 they answered they don't know. And I asked, did I 0:17:53.200 --> 0:17:57.720 do something to bring this on to myself? Because I 0:17:57.760 --> 0:18:00.880 couldn't make sense why it happened. 0:18:01.520 --> 0:18:08.600 I want to hug you. That's so much. Neuromylitis optica 0:18:08.680 --> 0:18:15.280 spectrum disorder or NMSD is an extremely rare disease. However, 0:18:15.640 --> 0:18:18.960 doctor Michael Levy and the system Professor of Neurology at 0:18:19.000 --> 0:18:24.879 Harvard Medical School and neurologist at Massachusetts General Hospital specializes 0:18:25.040 --> 0:18:29.240 in treating it. Now, if you had to, not necessarily 0:18:29.280 --> 0:18:32.280 in a nutshell, but in Layman's terms, could you give 0:18:32.280 --> 0:18:35.520 me a definition for an MOOSD. 0:18:36.400 --> 0:18:40.080 There's an immune response against a self protein called the 0:18:40.119 --> 0:18:43.719 aquaporn four. Your immune system is not supposed to react 0:18:43.720 --> 0:18:47.359 to it, but in people with NMO it does, and 0:18:47.440 --> 0:18:51.720 specifically to the acoporn four protein within the spinal cord 0:18:51.760 --> 0:18:55.479 and the optic nerve, and when it attacks the optic 0:18:55.560 --> 0:18:59.560 nerves and the spinal cord, it leads to blindness and paralysis. 0:19:01.119 --> 0:19:06.960 As doctor Leevy further explains NMOSD is most commonly found 0:19:07.000 --> 0:19:11.560 in women, particularly those of Asian or African ancestry. While 0:19:11.640 --> 0:19:15.560 its development is not well understood, genetics are believed to 0:19:15.600 --> 0:19:20.920 play a role. Although Samayra tested negative for NMSD antibodies, 0:19:21.240 --> 0:19:25.240 her clinical diagnosis was based on her full symptomatic picture 0:19:25.560 --> 0:19:29.520 and medical history, including the severity and frequency of her 0:19:29.600 --> 0:19:34.480 flare ups. What are some other common symptoms or maybe 0:19:34.920 --> 0:19:37.480 early indicators that that's the progression. 0:19:38.200 --> 0:19:41.719 There are a few early indicators if the immune system 0:19:41.920 --> 0:19:44.560 attacks the optic nerve. One of the first signs is 0:19:44.600 --> 0:19:48.119 pain with eye movements. It feels like every time you 0:19:48.160 --> 0:19:50.359 move your eyes up or down or left or right, 0:19:50.400 --> 0:19:52.920 it hurts, and so people just want to look straight 0:19:53.040 --> 0:19:56.199 or just keep their eyes closed. And then that evolves 0:19:56.240 --> 0:19:59.960 fairly quickly over hours to days into a gray spot 0:20:00.520 --> 0:20:03.440 over some part of your vision, usually in one eye, 0:20:03.480 --> 0:20:06.400 but sometimes both eyes, and then that evolves to near 0:20:06.400 --> 0:20:09.800 complete vision loss over about a week or two. So 0:20:09.880 --> 0:20:12.840 that's the typical course for an attack in the optic nerve. 0:20:13.400 --> 0:20:17.199 If it attacks the spinal cord, the typical progression is 0:20:17.720 --> 0:20:21.359 either weakness in an arm or leg or both, or 0:20:21.480 --> 0:20:26.959 numbness in the same distribution, and usually pain pain feels 0:20:27.040 --> 0:20:31.240 like abanding, wrapping pain around your abdomen. And then it's 0:20:31.280 --> 0:20:35.560 also usually associated with bowel and bladder dysfunction retention, so 0:20:35.640 --> 0:20:38.639 things don't come out like they should. When I first 0:20:38.680 --> 0:20:42.880 started working in this space, the average time from onset 0:20:42.920 --> 0:20:47.520 to diagnosis was over three years. Now it's under nine months. Wow, 0:20:47.600 --> 0:20:50.720 So it's not great now, But I would say we've 0:20:50.760 --> 0:20:53.680 made a lot of progress because we have a blood test. 0:20:54.520 --> 0:21:01.240 How do you support your patience in managing the anxiety 0:21:01.560 --> 0:21:04.560 and the depression and the fear that must come with 0:21:04.680 --> 0:21:06.240 receiving the diagnosis. 0:21:06.680 --> 0:21:09.159 Well, I'm always honest with people. I tell them that 0:21:09.280 --> 0:21:13.000 in my clinic, twenty three percent of people are in wheelchairs, 0:21:13.880 --> 0:21:17.720 sixty percent are blind in at least one eye, who 0:21:17.760 --> 0:21:20.000 have the alkal porn fo antibody they are I can't 0:21:20.640 --> 0:21:23.160 lie to them and say, oh, it'll be okay. And 0:21:23.400 --> 0:21:25.520 it used to be that thirty percent of our patient 0:21:25.560 --> 0:21:28.760 population would die of NMO within five years. That's no 0:21:28.840 --> 0:21:32.639 longer the case. The mortality has plummeted from thirty percent 0:21:32.680 --> 0:21:36.800 to nine percent. Room to improve, for sure, But I 0:21:36.920 --> 0:21:39.320 start with those grim figures. But then I tell them 0:21:39.440 --> 0:21:42.200 the good news about NMO, because there is one piece 0:21:42.200 --> 0:21:45.639 of good news about NMO, which is that if we 0:21:45.720 --> 0:21:49.920 start treatment and we can prevent future attacks, then they'll 0:21:49.960 --> 0:21:52.560 never be worse than they are today, really, because there's 0:21:52.560 --> 0:21:57.520 no degenerative disease process going on in the background, nothing 0:21:57.600 --> 0:22:01.720 like that. All of the disability is mediated by attacks. 0:22:02.080 --> 0:22:04.800 So if we could prevent attacks, we can prevent all 0:22:04.840 --> 0:22:05.720 future problems. 0:22:08.119 --> 0:22:12.040 Samaira was blindsided by all of this, but her immediate 0:22:12.119 --> 0:22:15.760 concern was the inflammation in her brain. Put on a 0:22:15.840 --> 0:22:19.119 regimen of treatments to contain it, she now faced the 0:22:19.160 --> 0:22:22.960 psychological toll as a new part of the balancing act. 0:22:23.920 --> 0:22:26.160 When I went home from the hospital, and of course 0:22:26.240 --> 0:22:31.480 everything changed. My dreams, my aspirations, my fears were now different. 0:22:32.200 --> 0:22:35.159 I was taking medicine now eighteen pills a day, I 0:22:35.240 --> 0:22:41.199 was getting chemotherapy, and uncertain of what my even the 0:22:41.240 --> 0:22:43.879 next six months were going to look like. And so 0:22:44.000 --> 0:22:47.080 I was in bed rest, just trying to relax and 0:22:47.119 --> 0:22:50.280 recover and make sense of all of what had happened. 0:22:51.119 --> 0:22:57.400 And I thought to myself, Man, even under these circumstances, 0:22:58.080 --> 0:23:03.160 I'm still so lucky, hie. I'm in the United States. 0:23:03.720 --> 0:23:07.359 I'm in Massachusetts. I'm in Boston, which is like a 0:23:07.520 --> 0:23:10.440 medical mecca in this country in the world. 0:23:11.359 --> 0:23:14.800 So just tell me what your symptoms. Because you get 0:23:14.800 --> 0:23:18.720 a diagnosis and you're getting treatment, but that doesn't mean 0:23:18.920 --> 0:23:22.800 it's cured or it's gone. How did your symptoms progress. 0:23:23.680 --> 0:23:26.720 The vision was very in and out, kind of dependent 0:23:26.840 --> 0:23:30.480 on the day, so I definitely struggled with vision loss 0:23:30.720 --> 0:23:34.560 most chronically for the first few years, but also just 0:23:34.640 --> 0:23:39.600 like feeling nerve pain and burning sensations in my body 0:23:40.600 --> 0:23:44.000 to the point where I felt totally debilitated. And for 0:23:44.119 --> 0:23:46.679 someone who is so expressive with their body, it was 0:23:47.280 --> 0:23:49.480 really I felt like I was a prisoner in my 0:23:49.560 --> 0:23:52.560 own body. I also lost a bit of hearing in 0:23:52.600 --> 0:23:55.560 my right ear when all of this happened, so that 0:23:55.760 --> 0:24:00.199 sense was also affected. Because of all these medications I 0:24:00.280 --> 0:24:03.119 was on, I couldn't taste food the way I wanted 0:24:03.119 --> 0:24:06.359 to taste food, so in a way, all of my 0:24:06.480 --> 0:24:10.120 senses were affected by this. And to make matters even 0:24:10.200 --> 0:24:16.239 more complicated, I don't test positive for the antibody that 0:24:16.400 --> 0:24:20.080 is associated with my disease. Thirty percent of us actually 0:24:20.160 --> 0:24:24.840 don't test positive. So what that meant for me was Okay, 0:24:24.880 --> 0:24:28.359 we've got this like working diagnosis, but let's check you 0:24:28.400 --> 0:24:32.399 for everything else, just in case we've missed something. On 0:24:32.480 --> 0:24:35.480 top of that, I had relapsed three times in the 0:24:35.520 --> 0:24:38.800 first you know, six months, So just like in and 0:24:38.840 --> 0:24:43.240 out of hospitals, getting aggressive treatments and interventions, but also 0:24:43.600 --> 0:24:48.680 looking for a potential other diagnosis, then becoming sterile from 0:24:48.880 --> 0:24:51.680 you know, my medications, and being told at twenty five 0:24:51.880 --> 0:24:55.080 that you may never be able to have children. So 0:24:55.240 --> 0:25:01.680 if you want to even consider it, freeze your eggs. 0:25:00.040 --> 0:25:02.520 Such a young age, freezing your eggs. It's like, Okay, 0:25:03.240 --> 0:25:06.240 we're being smart about this, you know, before the chema, 0:25:06.480 --> 0:25:10.480 before any other the drugs, but like it's also like okay, wow, 0:25:10.920 --> 0:25:12.800 So again, everything was just so confusing. 0:25:13.520 --> 0:25:15.879 It was just crazy. I mean, I was going through 0:25:16.560 --> 0:25:21.560 treatment after treatment for this disease, taking oral medications every day, now, 0:25:21.600 --> 0:25:26.399 harvesting my eggs, feeling so uncomfortable in my body, looking 0:25:26.440 --> 0:25:29.879