1 00:00:06,920 --> 00:00:10,560 Speaker 1: When I was walking back and I lost my vision, 2 00:00:10,800 --> 00:00:14,000 Speaker 1: it was all gone. I did not know what was 3 00:00:14,040 --> 00:00:16,200 Speaker 1: going on. Nothing like that had ever happened to me 4 00:00:16,320 --> 00:00:17,119 Speaker 1: before in my life. 5 00:00:17,720 --> 00:00:21,120 Speaker 2: Doctors just gave her a timeline of we don't think 6 00:00:21,160 --> 00:00:23,400 Speaker 2: you'll look past your twenty fifth birthday. 7 00:00:23,440 --> 00:00:29,720 Speaker 3: The life becomes so restrictive that the fear that dominates not. 8 00:00:31,320 --> 00:00:33,200 Speaker 4: Becomes unbearable. 9 00:00:33,880 --> 00:00:37,840 Speaker 1: I didn't have these long term dreams or goals because 10 00:00:37,840 --> 00:00:41,240 Speaker 1: there was no long term I was just fighting survive 11 00:00:41,280 --> 00:00:44,240 Speaker 1: every day. 12 00:00:44,440 --> 00:00:48,200 Speaker 5: How terrifying would it be to fight an unknown enemy, 13 00:00:48,880 --> 00:00:53,040 Speaker 5: one you didn't recognize and didn't see coming. What if 14 00:00:53,120 --> 00:00:56,720 Speaker 5: that enemy was coming from within a disease that even 15 00:00:56,840 --> 00:01:00,959 Speaker 5: doctors couldn't identify. Nearly half of my can suffer from 16 00:01:01,040 --> 00:01:05,480 Speaker 5: some chronic illness, and many struggle for an accurate diagnosis. 17 00:01:06,360 --> 00:01:12,080 Speaker 5: These are their stories. I'm Lauren Bray Pacheco and this 18 00:01:12,400 --> 00:01:13,240 Speaker 5: is symptomatic. 19 00:01:18,640 --> 00:01:21,800 Speaker 1: Hi, I've Sienna. If you haven't met me yet, I 20 00:01:21,840 --> 00:01:25,160 Speaker 1: would say that I am a thirty one year old 21 00:01:25,240 --> 00:01:28,800 Speaker 1: disabled girl in the world, just sharing my real life 22 00:01:29,240 --> 00:01:33,080 Speaker 1: so that hopefully people like me see themselves represented and 23 00:01:33,080 --> 00:01:35,520 Speaker 1: feel a little less alone. 24 00:01:36,120 --> 00:01:39,959 Speaker 5: Sienna Deetree is Sunshine in a bottle. She moves through 25 00:01:39,959 --> 00:01:45,959 Speaker 5: life with contagious enthusiasm and undeniable warmth. She is vivacious, creative, 26 00:01:46,000 --> 00:01:49,640 Speaker 5: and talented to boot with a tenacity for squeezing the 27 00:01:49,760 --> 00:01:53,040 Speaker 5: juice out of every lemon. She has a large community 28 00:01:53,040 --> 00:01:56,080 Speaker 5: of followers on social media, where she shares her incredible 29 00:01:56,120 --> 00:02:02,560 Speaker 5: fashion and beautiful energy with her audience. So aside from 30 00:02:02,600 --> 00:02:08,280 Speaker 5: being a social media star, slash influencer, slash advocate, what 31 00:02:08,400 --> 00:02:10,040 Speaker 5: are your loves? What are your passions? 32 00:02:10,639 --> 00:02:14,560 Speaker 1: I love surfing and I've always been obsessed with dogs, 33 00:02:14,560 --> 00:02:16,480 Speaker 1: like I was a little girl at the library who 34 00:02:16,600 --> 00:02:19,240 Speaker 1: checked out all the dog books and rotated between all 35 00:02:19,280 --> 00:02:22,680 Speaker 1: of them. I love the color blue. I love cooking, 36 00:02:22,800 --> 00:02:27,200 Speaker 1: I love reading, I love spending time outside, and I 37 00:02:27,240 --> 00:02:28,440 Speaker 1: also play saxophone. 38 00:02:28,600 --> 00:02:32,720 Speaker 5: Those Siena's true love of life is clearly present. She 39 00:02:32,760 --> 00:02:36,480 Speaker 5: has faced many challenges starting from a very young age. 40 00:02:36,919 --> 00:02:41,960 Speaker 5: Tell me what you remember in terms of your earliest 41 00:02:42,080 --> 00:02:47,520 Speaker 5: memory that something might not have been going well with 42 00:02:47,639 --> 00:02:48,120 Speaker 5: your health. 43 00:02:49,120 --> 00:02:52,320 Speaker 1: I think my earliest memory is I don't remember a 44 00:02:52,360 --> 00:02:54,720 Speaker 1: time when I didn't have migraines, Like I just thought 45 00:02:55,000 --> 00:02:59,040 Speaker 1: everybody had terrible headaches almost every single day. I know 46 00:02:59,560 --> 00:03:01,640 Speaker 1: that my mom will tell me that I'd be crying 47 00:03:01,720 --> 00:03:03,880 Speaker 1: as a baby the middle of the night, or she'd 48 00:03:03,919 --> 00:03:05,880 Speaker 1: come to check on me, and when I was sleeping, 49 00:03:05,960 --> 00:03:08,480 Speaker 1: I'd be purple and she was just like, why my 50 00:03:08,560 --> 00:03:12,000 Speaker 1: baby purple? That doesn't seem normal. But they kind of 51 00:03:12,040 --> 00:03:15,160 Speaker 1: wrote her office of worried first time mom, what would. 52 00:03:15,000 --> 00:03:20,680 Speaker 5: Be the next major symptom that manifested itself in your childhood. 53 00:03:21,040 --> 00:03:23,639 Speaker 1: I remember anytime I would stand up, everything would go black. 54 00:03:24,040 --> 00:03:26,239 Speaker 1: But I thought that was normal, And then I just 55 00:03:26,280 --> 00:03:28,280 Speaker 1: started to think all these other things that I would 56 00:03:28,400 --> 00:03:32,720 Speaker 1: notice were also normal. I would play soccer and my 57 00:03:32,880 --> 00:03:37,120 Speaker 1: legs would get heavy, like I was walking through cement 58 00:03:37,320 --> 00:03:39,960 Speaker 1: or I had cement boots on, and I'd see the 59 00:03:39,960 --> 00:03:42,000 Speaker 1: other kids sitting on the sideline and I was like, oh, 60 00:03:42,040 --> 00:03:44,080 Speaker 1: that's why they went and sat down too. Their legs 61 00:03:44,160 --> 00:03:47,040 Speaker 1: must have been really heavy. So I just assumed everybody 62 00:03:47,080 --> 00:03:49,080 Speaker 1: else had these experiences. 63 00:03:49,560 --> 00:03:52,800 Speaker 5: When was the first time that you remember your parents 64 00:03:53,000 --> 00:03:56,160 Speaker 5: keying in on something not being normal and taking you 65 00:03:56,200 --> 00:03:56,840 Speaker 5: to the doctor. 66 00:03:57,200 --> 00:04:00,680 Speaker 1: My parents were really big about taking me into the pediatrician. 67 00:04:01,200 --> 00:04:03,160 Speaker 1: My mom knew there was something going on, Like in 68 00:04:03,200 --> 00:04:05,800 Speaker 1: my parents' head, I was already the sick kid. So 69 00:04:05,920 --> 00:04:07,920 Speaker 1: they would take me to the doctors and the doctor 70 00:04:08,120 --> 00:04:11,760 Speaker 1: be like, Okay, that's fine, maybe she's gonna get her 71 00:04:11,800 --> 00:04:15,080 Speaker 1: period soon. I'm in like third grade. That was absolutely 72 00:04:15,120 --> 00:04:17,600 Speaker 1: not it. They would just turn it into these other 73 00:04:17,720 --> 00:04:21,120 Speaker 1: things and just kind of like write it all off. Eventually, 74 00:04:21,480 --> 00:04:23,280 Speaker 1: it was just like, what's the point. 75 00:04:25,279 --> 00:04:28,880 Speaker 5: Do you think it's possible that your effufescent personality may 76 00:04:28,920 --> 00:04:32,680 Speaker 5: have in some way worked against you in those interactions 77 00:04:32,680 --> 00:04:33,359 Speaker 5: with doctors? 78 00:04:33,920 --> 00:04:38,119 Speaker 1: Well, definitely, it definitely did. I remember as I got 79 00:04:38,160 --> 00:04:40,640 Speaker 1: older and we'd go to see like specialists, my mom 80 00:04:40,720 --> 00:04:43,840 Speaker 1: be like, so today we're gonna be a little more chill, 81 00:04:44,240 --> 00:04:46,880 Speaker 1: We're gonna look a little more sick. And I was like, 82 00:04:47,160 --> 00:04:51,039 Speaker 1: what come again, Maybe like let them see how sick 83 00:04:51,160 --> 00:04:54,440 Speaker 1: you actually are. Don't tell them about your best days, 84 00:04:54,560 --> 00:04:58,520 Speaker 1: tell them about your worst day. Your worst day needs 85 00:04:58,560 --> 00:05:00,119 Speaker 1: to do what they think every day is like. 86 00:05:01,680 --> 00:05:05,279 Speaker 5: Although Siena spent her childhood in and out of doctors' offices, 87 00:05:05,720 --> 00:05:09,479 Speaker 5: being sick was never something that she felt defined her. 88 00:05:09,800 --> 00:05:13,240 Speaker 5: She had an active social life, she played sports, she 89 00:05:13,360 --> 00:05:16,400 Speaker 5: was a good student, and she mastered the art of 90 00:05:16,560 --> 00:05:22,080 Speaker 5: musical performance. But as she got older, new symptoms started 91 00:05:22,080 --> 00:05:28,280 Speaker 5: to pop up. So things are progressing, the migraines, the lightheadedness, 92 00:05:28,440 --> 00:05:32,799 Speaker 5: the heaviness of the lower body, and even things going 93 00:05:32,880 --> 00:05:36,640 Speaker 5: black when you stood up quickly. And then there was 94 00:05:36,720 --> 00:05:40,320 Speaker 5: the fateful day of marching band practice. What happened? 95 00:05:41,560 --> 00:05:43,279 Speaker 1: I think that was probably one of the scariest days 96 00:05:43,279 --> 00:05:45,760 Speaker 1: of my life. It was before my first day of 97 00:05:45,880 --> 00:05:48,120 Speaker 1: ninth grade. I was going into high school. I was 98 00:05:48,240 --> 00:05:52,160 Speaker 1: very excited but nervous. But I was so excited because 99 00:05:52,240 --> 00:05:54,840 Speaker 1: it was our first day of band practice before going 100 00:05:54,839 --> 00:05:58,279 Speaker 1: away to band camp and I loved playing saxophone. We 101 00:05:58,320 --> 00:06:00,839 Speaker 1: went out to practice on the field. It was perfect. 102 00:06:00,880 --> 00:06:03,520 Speaker 1: I learned about like marching for the first time. I 103 00:06:03,560 --> 00:06:05,839 Speaker 1: was like, this is so cool, This is so fun. 104 00:06:06,120 --> 00:06:08,200 Speaker 1: And then we came inside and I had to go 105 00:06:08,240 --> 00:06:09,960 Speaker 1: to the bathroom, so I was like, cool, put my 106 00:06:10,000 --> 00:06:12,479 Speaker 1: sex phone down, walked over to the bathroom and I 107 00:06:12,520 --> 00:06:17,200 Speaker 1: was walking back and I lost my vision. It was 108 00:06:17,360 --> 00:06:21,480 Speaker 1: all gone, and I did not know what was going on. 109 00:06:21,600 --> 00:06:23,800 Speaker 1: Nothing like that had ever happened to me before in 110 00:06:23,800 --> 00:06:28,000 Speaker 1: my life. It was tunneled. Everything got darker, and then 111 00:06:28,080 --> 00:06:33,120 Speaker 1: it started tunneling out. While everything was darker, I had 112 00:06:33,160 --> 00:06:37,320 Speaker 1: to figure it out. I heard the noise. I'd never 113 00:06:37,360 --> 00:06:39,279 Speaker 1: been in this building before, so I kind of like 114 00:06:39,320 --> 00:06:42,600 Speaker 1: followed along the wall, like touching it. I remember like 115 00:06:42,760 --> 00:06:46,479 Speaker 1: following it back to where I knew the bandroom was. 116 00:06:47,680 --> 00:06:51,800 Speaker 1: I heard my lesson teacher's voice, so I followed that, 117 00:06:52,360 --> 00:06:54,279 Speaker 1: and there was like a little office in the bandroom, 118 00:06:54,279 --> 00:06:57,080 Speaker 1: and I heard her and there apparently I was just 119 00:06:57,520 --> 00:06:59,719 Speaker 1: as pale as could be. My lips were like purple, 120 00:06:59,800 --> 00:07:02,960 Speaker 1: my fingers hands were like purple. She took one luck 121 00:07:03,000 --> 00:07:05,480 Speaker 1: at me and was like, you need to sit down now. 122 00:07:06,960 --> 00:07:12,040 Speaker 1: So I sat down right when she told me to 123 00:07:12,080 --> 00:07:14,560 Speaker 1: sit down, and I actually sat on someone. 124 00:07:15,320 --> 00:07:16,760 Speaker 6: She just happened to sit on me. 125 00:07:17,440 --> 00:07:18,920 Speaker 5: That is Hollie. 126 00:07:19,080 --> 00:07:21,960 Speaker 1: I'd never met her before, but today we're best friends. 127 00:07:22,320 --> 00:07:24,160 Speaker 2: She just sat in the first spot that she thought 128 00:07:24,240 --> 00:07:26,480 Speaker 2: was available, or remembering where there was a couch. 129 00:07:27,400 --> 00:07:29,880 Speaker 5: These two have been able to connect on a level 130 00:07:30,360 --> 00:07:34,280 Speaker 5: more than most because Holly has also struggled with her 131 00:07:34,360 --> 00:07:37,200 Speaker 5: own chronic health conditions. 132 00:07:37,680 --> 00:07:40,160 Speaker 2: I felt invisible for a second, and then we realized, 133 00:07:40,280 --> 00:07:43,680 Speaker 2: oh no, we really didn't understand the full magnitude of 134 00:07:43,720 --> 00:07:47,360 Speaker 2: it that she couldn't see me. We knew she had 135 00:07:48,120 --> 00:07:52,840 Speaker 2: some health scares and health mysteries going on, So sitting 136 00:07:52,840 --> 00:07:54,360 Speaker 2: on me, it was just like I gave her a 137 00:07:54,440 --> 00:07:56,680 Speaker 2: nice big hug and told her to stay there. 138 00:07:56,960 --> 00:08:00,600 Speaker 1: Oh yeah, that's how I met Holly and my vision 139 00:08:00,720 --> 00:08:01,760 Speaker 1: all on the same day. 140 00:08:02,040 --> 00:08:04,640 Speaker 5: Did you go to the doctor after that incident? 141 00:08:05,000 --> 00:08:07,240 Speaker 1: Actually, I called my dad and I think we just 142 00:08:07,280 --> 00:08:07,840 Speaker 1: went home. 143 00:08:09,760 --> 00:08:13,360 Speaker 5: And then after that day what happened. 144 00:08:15,840 --> 00:08:19,600 Speaker 1: As high school went on, I got really sick. Everything 145 00:08:19,640 --> 00:08:22,480 Speaker 1: just started progressing, which was not great timing because that's 146 00:08:22,480 --> 00:08:24,880 Speaker 1: when you're trying out for music schools for college. Is 147 00:08:24,960 --> 00:08:27,240 Speaker 1: your junior year. A lot of doctors were just like, Oh, 148 00:08:27,280 --> 00:08:29,840 Speaker 1: it's stressed. You got big math tests coming up, you 149 00:08:29,880 --> 00:08:31,800 Speaker 1: got a big audition. I was like, I'm excited for 150 00:08:31,840 --> 00:08:33,840 Speaker 1: this audition. I don't know what you're talking about. 151 00:08:34,200 --> 00:08:37,240 Speaker 5: No formal diagnosis is given to you. 152 00:08:37,720 --> 00:08:39,079 Speaker 1: So in the beginning they were just like, oh, it's 153 00:08:39,120 --> 00:08:45,119 Speaker 1: all complex migraines. That's literally everything you're experiencing is complex migraines. 154 00:08:45,720 --> 00:08:48,959 Speaker 1: And then they added epilepsy. Here's a bunch of different 155 00:08:49,000 --> 00:08:52,000 Speaker 1: epileptic drugs. Let's try them all out. So we did, 156 00:08:52,720 --> 00:08:56,080 Speaker 1: and that was somewhere between my junior and senior year 157 00:08:56,120 --> 00:08:56,840 Speaker 1: of high school. 158 00:08:57,120 --> 00:09:00,160 Speaker 5: The reason why you had escorts in high school. Was 159 00:09:00,320 --> 00:09:01,520 Speaker 5: because of the epilepsy. 160 00:09:01,840 --> 00:09:05,480 Speaker 1: I was passing out multiple times a day a lot, 161 00:09:06,000 --> 00:09:07,360 Speaker 1: which is why I had to have people in the 162 00:09:07,360 --> 00:09:09,520 Speaker 1: hallways with me in high school. They actually told my 163 00:09:09,520 --> 00:09:12,400 Speaker 1: parents it was a liability issue at one point, and 164 00:09:12,640 --> 00:09:14,720 Speaker 1: they're like, I couldn't be alone even if I had 165 00:09:14,720 --> 00:09:18,199 Speaker 1: to go to the bathroom. Hey, so, whoever do you 166 00:09:18,280 --> 00:09:20,640 Speaker 1: want to go to the bathroom with me? I gotta go. 167 00:09:21,120 --> 00:09:23,160 Speaker 1: It made me feel terrible as a high schooler, like 168 00:09:23,440 --> 00:09:26,640 Speaker 1: not only did I know literally no one else like me, 169 00:09:27,360 --> 00:09:31,480 Speaker 1: but then you always had to ask other people to 170 00:09:31,520 --> 00:09:35,360 Speaker 1: help you. That wasn't a part of me that I 171 00:09:35,400 --> 00:09:37,880 Speaker 1: was ashamed of either, Like it was just one part 172 00:09:37,920 --> 00:09:40,200 Speaker 1: of me, and it did impact my whole life, but 173 00:09:40,200 --> 00:09:42,800 Speaker 1: it was still just one part of me, like how 174 00:09:42,840 --> 00:09:43,679 Speaker 1: my eyes are brown. 175 00:09:44,559 --> 00:09:49,840 Speaker 5: Somehow, despite debilitating migraines, episodes of heavy legs and arms, 176 00:09:50,320 --> 00:09:54,520 Speaker 5: loss of vision, and fainting, Sienna had become a star 177 00:09:54,679 --> 00:09:58,520 Speaker 5: saxophone player and was made first chair in her high 178 00:09:58,559 --> 00:10:03,840 Speaker 5: school band Take Me to Your Senior year Saxophone concert solo. 179 00:10:04,520 --> 00:10:08,600 Speaker 1: I had been super excited for it. I had been 180 00:10:08,840 --> 00:10:12,160 Speaker 1: dreaming of this moment for years. I'd done tons of competitions. 181 00:10:12,679 --> 00:10:15,600 Speaker 1: I love performing. I'd never had stage frights, so that 182 00:10:15,760 --> 00:10:20,560 Speaker 1: was not part of it. And I got to the 183 00:10:20,640 --> 00:10:25,559 Speaker 1: concert and everything was fine. Then playing the solo, it 184 00:10:25,679 --> 00:10:32,000 Speaker 1: started all falling apart. I played my solo. I was 185 00:10:32,040 --> 00:10:37,120 Speaker 1: smiling afterwards and shaking the director's hand, getting these flowers 186 00:10:37,280 --> 00:10:41,720 Speaker 1: the whole nine yards, and it became hard to smile. 187 00:10:42,520 --> 00:10:46,080 Speaker 1: I couldn't do it, so I went back to my 188 00:10:46,200 --> 00:10:51,719 Speaker 1: seat and it just became harder to move. Everybody else 189 00:10:51,800 --> 00:10:53,840 Speaker 1: left the stage, and I couldn't get up to leave 190 00:10:53,880 --> 00:10:56,800 Speaker 1: the stage. Everything just felt so heavy. So I just 191 00:10:56,800 --> 00:11:00,600 Speaker 1: sat there and the band director me out the side 192 00:11:00,600 --> 00:11:02,320 Speaker 1: of his eye and he came back, and my parents 193 00:11:02,320 --> 00:11:06,560 Speaker 1: came up. Guayaciana still on the stage. I was under 194 00:11:06,559 --> 00:11:09,079 Speaker 1: a cold air duct and I was like, I can't 195 00:11:09,080 --> 00:11:12,280 Speaker 1: get up. Somebody suggested that maybe she didn't have enough 196 00:11:12,320 --> 00:11:15,320 Speaker 1: to eat, so they gave me some really sugary snacks. 197 00:11:15,559 --> 00:11:18,400 Speaker 1: They brought me all these like little cream puffs and things, 198 00:11:18,480 --> 00:11:23,520 Speaker 1: and I like inhaled them and it got worse. My 199 00:11:23,600 --> 00:11:29,679 Speaker 1: parents took me to the er. This is not normal, 200 00:11:29,960 --> 00:11:33,840 Speaker 1: even for you. We went to the er and they 201 00:11:34,040 --> 00:11:36,440 Speaker 1: said I was having a hemiplegic migraine. Because I was 202 00:11:36,520 --> 00:11:39,880 Speaker 1: the migraine kid. They did some stroke checks and things 203 00:11:39,920 --> 00:11:42,199 Speaker 1: like that, but they're like, just go home and take 204 00:11:42,200 --> 00:11:43,200 Speaker 1: your migraine meds. 205 00:11:43,720 --> 00:11:50,479 Speaker 5: You're getting possible diagnosis but no solutions. 206 00:11:50,840 --> 00:11:53,400 Speaker 1: Yeah, they had me on a ton of medication. It 207 00:11:53,600 --> 00:11:57,080 Speaker 1: just wasn't really helping. Even at that point. The migraine 208 00:11:57,120 --> 00:12:03,000 Speaker 1: meds used to have so many side effects. It wasn't great. 209 00:12:05,120 --> 00:12:08,200 Speaker 5: Still battling to make it through the day without passing out, 210 00:12:08,760 --> 00:12:12,640 Speaker 5: Sena went off to Saginaw Valley State University to study 211 00:12:12,720 --> 00:12:17,319 Speaker 5: music education and saxophone performance. Though she was thriving in 212 00:12:17,400 --> 00:12:22,040 Speaker 5: her degree, her symptoms were escalating and becoming more impossible 213 00:12:22,160 --> 00:12:22,719 Speaker 5: to live with. 214 00:12:23,280 --> 00:12:26,600 Speaker 1: I would wake up without vision almost every single day. 215 00:12:27,120 --> 00:12:29,480 Speaker 1: There was also like fifty first dates. There was this 216 00:12:29,600 --> 00:12:32,880 Speaker 1: huge memory loss that came with it. I would write 217 00:12:32,920 --> 00:12:35,959 Speaker 1: down before I went to bed what I did that day, 218 00:12:36,080 --> 00:12:38,000 Speaker 1: so the next morning when I woke up, that's the 219 00:12:38,000 --> 00:12:40,240 Speaker 1: only reason I knew. I kind of came up with 220 00:12:40,280 --> 00:12:44,680 Speaker 1: these systems that helped me navigate it all. I'm going 221 00:12:44,760 --> 00:12:46,120 Speaker 1: to be like this the rest of my life, so 222 00:12:46,160 --> 00:12:47,319 Speaker 1: I got to learn how to do this. 223 00:12:48,040 --> 00:12:50,880 Speaker 5: I know that there was a very specific incident in 224 00:12:50,920 --> 00:12:54,280 Speaker 5: which Triton saved your life. 225 00:12:54,559 --> 00:12:59,440 Speaker 1: Yeah. So I was home for Christmas from college and 226 00:12:59,559 --> 00:13:03,400 Speaker 1: I was taking a shower. My dog, Triton was my shadow. 227 00:13:03,480 --> 00:13:06,360 Speaker 1: He was my show dog, so he went everywhere with me, Like, 228 00:13:06,400 --> 00:13:08,000 Speaker 1: if I went in the bathroom, Triton would be there, 229 00:13:08,000 --> 00:13:10,880 Speaker 1: if I took a shower, Triton would be there. And 230 00:13:11,240 --> 00:13:15,240 Speaker 1: I passed out in the shower when I felt I 231 00:13:15,360 --> 00:13:21,600 Speaker 1: hit my head and it closed the drain, so not good. 232 00:13:22,280 --> 00:13:29,240 Speaker 1: When I came back too, Tryton had gotten partially into 233 00:13:29,280 --> 00:13:32,800 Speaker 1: the shower and was holding my head up out of 234 00:13:32,840 --> 00:13:39,160 Speaker 1: the water. Oh at the time, my primary care doctor, 235 00:13:39,160 --> 00:13:40,880 Speaker 1: that's who I went and saw afterwards, she was like, 236 00:13:40,920 --> 00:13:43,760 Speaker 1: you definitely had like a near death experience, so it 237 00:13:43,800 --> 00:13:46,920 Speaker 1: was super scary. And at the appointment she was like, 238 00:13:47,120 --> 00:13:49,360 Speaker 1: in order to keep doing things independently, I think you 239 00:13:49,400 --> 00:13:52,720 Speaker 1: need to get a service dot. And I didn't really 240 00:13:52,720 --> 00:13:56,400 Speaker 1: even know anything about service dogs at that point. And 241 00:13:56,480 --> 00:13:58,920 Speaker 1: it was funny because at the same time, the girl 242 00:13:58,960 --> 00:14:03,600 Speaker 1: I'd sat on, Hollie, also had developed chronic conditions of 243 00:14:03,600 --> 00:14:07,120 Speaker 1: her own. Well I grew up with mine, she was 244 00:14:07,120 --> 00:14:09,720 Speaker 1: starting to develop hers and was thinking about getting a 245 00:14:09,760 --> 00:14:10,400 Speaker 1: service dog. 246 00:14:10,600 --> 00:14:13,560 Speaker 2: We had both kind of been considering it on our 247 00:14:13,600 --> 00:14:14,400 Speaker 2: own journeys. 248 00:14:14,520 --> 00:14:17,520 Speaker 6: I had shared that, okay, I was going to. 249 00:14:17,520 --> 00:14:21,840 Speaker 2: Be moving home and one of my archery students parents 250 00:14:21,840 --> 00:14:24,800 Speaker 2: had a service dog, and I had jokingly said, well, 251 00:14:24,840 --> 00:14:28,640 Speaker 2: if only there was a passing out dog, and she said, well, 252 00:14:28,680 --> 00:14:31,640 Speaker 2: did you know that's what this dog does. I didn't 253 00:14:31,640 --> 00:14:33,440 Speaker 2: realize that they had service dogs for that. I just 254 00:14:33,440 --> 00:14:34,920 Speaker 2: thought they were searing eye dogs. 255 00:14:35,240 --> 00:14:38,400 Speaker 1: My first service dog was Opie. He is a black Lab. 256 00:14:38,920 --> 00:14:40,920 Speaker 1: He's just a ray of sunshine. You think of the 257 00:14:41,000 --> 00:14:43,800 Speaker 1: lab that's just like a little dorky and super happy. 258 00:14:43,840 --> 00:14:44,640 Speaker 1: That was Opie. 259 00:14:45,600 --> 00:14:47,440 Speaker 5: Did he go back to college with you? 260 00:14:47,920 --> 00:14:53,960 Speaker 1: Yeah. Opie luckily naturally alerted me passing out and actually 261 00:14:54,000 --> 00:14:57,600 Speaker 1: like my vision loss. So he would go to jazz 262 00:14:57,640 --> 00:15:00,920 Speaker 1: band and he was so funny. Professor would go down 263 00:15:00,960 --> 00:15:03,080 Speaker 1: to line and tune and everyone and he didn't even 264 00:15:03,080 --> 00:15:05,040 Speaker 1: have to say anything when people were out tuned because 265 00:15:05,080 --> 00:15:10,160 Speaker 1: this dog put just like er moaning when people were 266 00:15:10,200 --> 00:15:16,600 Speaker 1: out of tune. But I couldn't stop passing out, and 267 00:15:17,200 --> 00:15:20,440 Speaker 1: I got to my saxophone lesson and passed out there. 268 00:15:21,760 --> 00:15:24,600 Speaker 1: I remember, like, see there laying on the floor. Professor. 269 00:15:24,800 --> 00:15:27,080 Speaker 1: She was like, you gotta call your mom. Mom, you 270 00:15:27,200 --> 00:15:30,800 Speaker 1: gotta go to the er. This is not okay. And 271 00:15:30,840 --> 00:15:33,800 Speaker 1: normally when I passed out like more than normal, it 272 00:15:33,880 --> 00:15:35,360 Speaker 1: was because something else was going on. 273 00:15:36,000 --> 00:15:39,680 Speaker 5: Sienna would continue to seek help from her doctors, desperately 274 00:15:39,720 --> 00:15:44,000 Speaker 5: trying to get assistance that would address her increased vision loss, 275 00:15:44,160 --> 00:15:48,040 Speaker 5: feelings of body heaviness, and an uptick in episodes in 276 00:15:48,120 --> 00:15:50,240 Speaker 5: which she would lose consciousness. 277 00:15:50,600 --> 00:15:54,360 Speaker 1: I had a really great primary care doctor all throughout college, 278 00:15:54,960 --> 00:15:57,000 Speaker 1: and she just kept trying to figure out what was 279 00:15:57,040 --> 00:16:00,000 Speaker 1: going on. I went to the er and they said 280 00:16:00,080 --> 00:16:02,400 Speaker 1: that they thought maybe I had an infection or something 281 00:16:02,480 --> 00:16:05,000 Speaker 1: and that's why I was passing out more. And they 282 00:16:05,040 --> 00:16:06,960 Speaker 1: said that they thought my wisdom teeth were coming in. 283 00:16:07,200 --> 00:16:10,240 Speaker 1: And by this point we knew like steroids normally helped 284 00:16:10,280 --> 00:16:12,920 Speaker 1: me if I got into like a bad flare, So 285 00:16:13,360 --> 00:16:15,880 Speaker 1: did the steroids. And then I woke up the next 286 00:16:15,880 --> 00:16:18,520 Speaker 1: morning and I just had this like stabbing in my 287 00:16:18,560 --> 00:16:21,440 Speaker 1: fingers and toes and it traveled all the way like 288 00:16:21,560 --> 00:16:25,160 Speaker 1: up my arms and legs, and as it traveled I 289 00:16:25,160 --> 00:16:30,120 Speaker 1: couldn't move anything anymore. It was so painful. My dad 290 00:16:30,120 --> 00:16:33,680 Speaker 1: had to like pick me up carry me into the er. 291 00:16:34,960 --> 00:16:37,840 Speaker 1: It was terrifying. I thought my wisdom teeth were coming in. 292 00:16:37,920 --> 00:16:39,840 Speaker 1: I thought this was kind of a good thing. This 293 00:16:39,880 --> 00:16:44,240 Speaker 1: is not a good thing, and they just set me 294 00:16:44,400 --> 00:16:49,760 Speaker 1: home the next day. You've got a UTI. It's what 295 00:16:49,800 --> 00:16:52,320 Speaker 1: it is. It's from the UTI. And it wasn't until 296 00:16:52,360 --> 00:16:54,800 Speaker 1: like I think six months later, I got into the 297 00:16:54,800 --> 00:16:57,360 Speaker 1: Cleveland clinic and saw Neural just there and he's like, 298 00:16:57,400 --> 00:17:00,120 Speaker 1: you had gyam Beret. How are you still alive? I 299 00:17:00,160 --> 00:17:04,119 Speaker 1: was like, I don't know. Probably because my primary care 300 00:17:04,160 --> 00:17:08,320 Speaker 1: doctor she started giving me like saline infusions at her office. 301 00:17:08,960 --> 00:17:12,400 Speaker 1: I was in physical therapy. I was just trying everything 302 00:17:12,440 --> 00:17:15,640 Speaker 1: I could, and it was just it was terrifying. 303 00:17:16,359 --> 00:17:20,440 Speaker 5: A quick aside. Guyon Beret syndrome is a rare autoimmune 304 00:17:20,480 --> 00:17:24,320 Speaker 5: disorder in which the body's immune system mistakenly attacks the 305 00:17:24,400 --> 00:17:29,280 Speaker 5: nerves outside the brain and spinal cord. So now you 306 00:17:29,280 --> 00:17:34,120 Speaker 5: have another diagnosis. Are you satisfied now that gyon beret 307 00:17:34,560 --> 00:17:38,440 Speaker 5: is the answer, that this is what's causing everything? 308 00:17:38,960 --> 00:17:43,159 Speaker 1: No one was, No one was. None of my doctors were. 309 00:17:43,400 --> 00:17:45,840 Speaker 1: There was just like all of these suggestions thrown out, 310 00:17:45,840 --> 00:17:47,760 Speaker 1: and I was meeting all of these new doctors and 311 00:17:47,840 --> 00:17:48,800 Speaker 1: all these specialists. 312 00:17:48,840 --> 00:17:50,960 Speaker 5: Do you remember what kind of things are being thrown 313 00:17:51,000 --> 00:17:52,640 Speaker 5: out at this point as possibilities? 314 00:17:53,560 --> 00:17:57,240 Speaker 1: There was just she have a mitochondrial disorder. I was 315 00:17:57,280 --> 00:18:01,160 Speaker 1: sent to endochronology. They realized my bloodsheed would go really 316 00:18:01,280 --> 00:18:03,760 Speaker 1: really low, and it was doing it all the time, 317 00:18:03,800 --> 00:18:06,440 Speaker 1: and it wouldn't go back up. What was going on there? 318 00:18:06,960 --> 00:18:11,080 Speaker 1: I saw a geneticist, we did a full exo, and 319 00:18:11,119 --> 00:18:13,320 Speaker 1: then a couple years later we did the pole genail 320 00:18:13,320 --> 00:18:16,440 Speaker 1: and sequencing. Still have migraines, so that was always there. 321 00:18:17,480 --> 00:18:19,080 Speaker 1: I was just like, I don't really care what I 322 00:18:19,119 --> 00:18:22,320 Speaker 1: have as long as I feel better, That's all I 323 00:18:22,400 --> 00:18:23,600 Speaker 1: cared about. 324 00:18:25,320 --> 00:18:34,120 Speaker 3: Mysteries of meticin sometimes is a hardship to the patient 325 00:18:34,480 --> 00:18:37,440 Speaker 3: and a heartache to the providers. 326 00:18:39,240 --> 00:18:44,520 Speaker 5: That is doctor Betool Hottipoglu, an indocrinologist at University Hospitals. 327 00:18:45,240 --> 00:18:48,800 Speaker 5: Into Chronology is the specialized area of medicine that focuses 328 00:18:48,840 --> 00:18:52,560 Speaker 5: on the indocrine system. They look at glands that produce 329 00:18:52,640 --> 00:18:58,720 Speaker 5: hormones responsible for regulating growth, metabolism, and reproduction. Doctor Huttipoglu 330 00:18:59,119 --> 00:19:02,160 Speaker 5: is often looking for answers that are not yet visible. 331 00:19:03,080 --> 00:19:07,720 Speaker 3: I explain some of these to my patients, telling them 332 00:19:08,240 --> 00:19:12,840 Speaker 3: you do have a bulb inside you, like a bulb 333 00:19:12,960 --> 00:19:17,040 Speaker 3: you put on the soil. You're asking me what this 334 00:19:17,080 --> 00:19:20,359 Speaker 3: is gonna be. I don't know the answer, because what 335 00:19:20,480 --> 00:19:25,520 Speaker 3: I can see, feel, smell is a bulb. I don't 336 00:19:25,560 --> 00:19:28,520 Speaker 3: know what kind of flower that is. So the mystery 337 00:19:28,800 --> 00:19:36,600 Speaker 3: sometimes needs more puzzle pieces together for a person to realize, Aha, that's. 338 00:19:36,400 --> 00:19:40,320 Speaker 4: What you have. But unfortunately it can take a long time. 339 00:19:41,119 --> 00:19:44,360 Speaker 5: When someone presents with an illness from an early age, 340 00:19:44,800 --> 00:19:49,080 Speaker 5: is it easier on some levels to dismiss. 341 00:19:49,160 --> 00:19:50,960 Speaker 4: I'm sure that is true. 342 00:19:51,040 --> 00:19:56,720 Speaker 3: Because medicine so used to seeing younger people to be 343 00:19:56,880 --> 00:20:04,000 Speaker 3: healthier and older we get, they perhaps accept more that 344 00:20:04,080 --> 00:20:08,240 Speaker 3: illnesses will come. And we do have also some differences, 345 00:20:08,320 --> 00:20:12,600 Speaker 3: as you know, especially that sometimes woman is treated at 346 00:20:12,600 --> 00:20:16,439 Speaker 3: bit differently than the men. So we do see that 347 00:20:16,680 --> 00:20:21,560 Speaker 3: dismissal a bit, unfortunately more in a younger and perhaps 348 00:20:21,640 --> 00:20:24,800 Speaker 3: a female than you would have seen it in an 349 00:20:24,880 --> 00:20:32,400 Speaker 3: older generation if the physicians or provider were seeing them. 350 00:20:32,560 --> 00:20:35,680 Speaker 5: By seeing a senior year in college, she wasn't able 351 00:20:35,720 --> 00:20:39,919 Speaker 5: to get through lessons without losing consciousness. Determined to finish 352 00:20:39,920 --> 00:20:43,320 Speaker 5: her degree, she asked her mom to accompany her to 353 00:20:43,440 --> 00:20:46,800 Speaker 5: classes so that she could be supervised in order to 354 00:20:46,840 --> 00:20:47,680 Speaker 5: stay in school. 355 00:20:49,960 --> 00:20:53,000 Speaker 1: My mom drove me an hour up to where I 356 00:20:53,040 --> 00:20:57,960 Speaker 1: went to college, and I went to classes. What's my mom? 357 00:20:58,680 --> 00:21:03,359 Speaker 1: I the things. I took, the tests, I took the exams, 358 00:21:03,880 --> 00:21:07,439 Speaker 1: and then I was seeing my primary care doctor. We 359 00:21:07,480 --> 00:21:12,480 Speaker 1: had this conversation, and you can't keep doing this. You're 360 00:21:12,680 --> 00:21:16,760 Speaker 1: just getting worse. This could be detrimental. You might not 361 00:21:17,000 --> 00:21:20,359 Speaker 1: make it. I just was like, Okay, I'll take a 362 00:21:20,400 --> 00:21:22,480 Speaker 1: semester off, I'll take a medical leave. It's going to 363 00:21:22,560 --> 00:21:24,439 Speaker 1: be fine, and then I'm going to be back. And 364 00:21:24,520 --> 00:21:27,600 Speaker 1: my medical leaf never ended and I never went back. 365 00:21:29,280 --> 00:21:32,119 Speaker 5: That must have been difficult, given how hard you fought. 366 00:21:33,840 --> 00:21:36,720 Speaker 1: I think at the time, I didn't even know really 367 00:21:36,760 --> 00:21:41,360 Speaker 1: who I was without being a saxophonist. That was my identity. 368 00:21:43,119 --> 00:21:45,680 Speaker 1: I was Sienna and I played saxophone. But at the 369 00:21:45,720 --> 00:21:49,520 Speaker 1: same time, my best friend Holly was moving home due 370 00:21:49,560 --> 00:21:51,920 Speaker 1: to her own chronic conditions. 371 00:21:52,520 --> 00:21:55,760 Speaker 5: Was there a time that you remember thinking I could 372 00:21:55,800 --> 00:21:57,080 Speaker 5: lose my best friend. 373 00:21:57,720 --> 00:21:58,080 Speaker 1: Yeah. 374 00:21:58,119 --> 00:21:58,800 Speaker 6: Absolutely. 375 00:21:59,240 --> 00:22:01,720 Speaker 2: There was a time where where doctors just gave her 376 00:22:02,080 --> 00:22:05,120 Speaker 2: a timeline of well, we don't think you'll live past 377 00:22:05,160 --> 00:22:06,200 Speaker 2: your twenty fifth birthday. 378 00:22:09,600 --> 00:22:14,080 Speaker 5: Will be right back with Symptomatic a Medical Mystery Podcast. 379 00:22:16,440 --> 00:22:20,960 Speaker 5: Now back to Symptomatic a Medical Mystery Podcast. At this 380 00:22:21,119 --> 00:22:24,000 Speaker 5: point in her life, Siena has been helped by many 381 00:22:24,080 --> 00:22:26,720 Speaker 5: doctors who have tried their best to understand the cause 382 00:22:26,720 --> 00:22:30,920 Speaker 5: of Sienna's symptoms. She has also been dismissed and misdiagnosed 383 00:22:30,960 --> 00:22:34,680 Speaker 5: more than once. By the time she meets doctor Hattipoglu, 384 00:22:35,040 --> 00:22:38,719 Speaker 5: she's come to accept that the passing out, the vision loss, 385 00:22:39,040 --> 00:22:42,160 Speaker 5: and the heaviness she feels in her body during episodes 386 00:22:42,400 --> 00:22:45,800 Speaker 5: when she can't physically move are maybe never going to 387 00:22:45,840 --> 00:22:50,080 Speaker 5: be understood. But from the moment they meet, Siena and 388 00:22:50,160 --> 00:22:56,600 Speaker 5: doctor Hatipoglu have a beautiful connection. How would you describe 389 00:22:56,840 --> 00:22:59,359 Speaker 5: Sienna to somebody who has not had the pleasure of 390 00:22:59,400 --> 00:23:00,600 Speaker 5: crossing paswths with her? 391 00:23:01,400 --> 00:23:09,840 Speaker 3: She is an amazing human being with determination and love 392 00:23:09,880 --> 00:23:15,359 Speaker 3: of life that she hangs into and never quits. I 393 00:23:15,480 --> 00:23:23,440 Speaker 3: just adore her personality and her way of gentle yet strong. 394 00:23:24,200 --> 00:23:25,560 Speaker 4: That's who she is. 395 00:23:27,400 --> 00:23:31,399 Speaker 1: And then she saw this poster for a lunch and 396 00:23:31,480 --> 00:23:35,160 Speaker 1: learn with Big Pharma Company where they'll teach the doctors 397 00:23:35,200 --> 00:23:39,040 Speaker 1: about the condition and their medication. She thought it sounded 398 00:23:39,160 --> 00:23:41,800 Speaker 1: like me. I think from how I understand how I went, 399 00:23:42,240 --> 00:23:47,320 Speaker 1: and she called me from the lunch and learn you 400 00:23:47,359 --> 00:23:49,520 Speaker 1: have to come see me in Cleveland tomorrow. 401 00:23:49,960 --> 00:23:53,920 Speaker 5: Now, you mentioned the analogy of a bulb in terms 402 00:23:54,040 --> 00:23:57,240 Speaker 5: of a plant or a flower. But tell me what 403 00:23:57,320 --> 00:24:01,240 Speaker 5: it was like sitting in that seminar sorts when the 404 00:24:01,359 --> 00:24:04,119 Speaker 5: light bulb went off and you realized, oh my lord, 405 00:24:04,640 --> 00:24:06,160 Speaker 5: this is what Sienna has. 406 00:24:06,320 --> 00:24:10,639 Speaker 3: I always listen to Patience as if I'm reading this 407 00:24:11,160 --> 00:24:15,879 Speaker 3: very interesting book. I would lose myself in their stories 408 00:24:15,920 --> 00:24:20,879 Speaker 3: sometimes when I see them. And one day I was 409 00:24:20,960 --> 00:24:25,119 Speaker 3: listening to actually someone talk to me and I'm looking 410 00:24:25,160 --> 00:24:27,280 Speaker 3: at him, and he keeps telling me all this. 411 00:24:28,760 --> 00:24:33,040 Speaker 4: Oh my god, that's what she has and he has. 412 00:24:33,160 --> 00:24:35,960 Speaker 4: I could not wait to tell them. 413 00:24:36,240 --> 00:24:39,840 Speaker 5: I said, oh my god, how didn't I think. 414 00:24:39,600 --> 00:24:43,280 Speaker 4: About it before? It was an amazing wake up quote 415 00:24:43,320 --> 00:24:43,639 Speaker 4: for me. 416 00:24:44,440 --> 00:24:49,280 Speaker 5: You remember the phone call that when you called Sienna. 417 00:24:49,560 --> 00:24:54,520 Speaker 3: It was fascinating to blurt. I think I know what 418 00:24:54,680 --> 00:24:58,160 Speaker 3: Sean I could of one hundred percent right. I mean, 419 00:24:58,160 --> 00:25:02,359 Speaker 3: this is medicine, it's rare. I think we can fix 420 00:25:02,440 --> 00:25:04,800 Speaker 3: this better than at least. 421 00:25:04,680 --> 00:25:08,000 Speaker 4: I could before. I didn't know, as you know, knowing 422 00:25:08,280 --> 00:25:09,359 Speaker 4: and naming. 423 00:25:09,040 --> 00:25:13,480 Speaker 5: It the name of the condition that had been taking away. 424 00:25:13,520 --> 00:25:18,600 Speaker 5: Seeina's ability to move was discovered all because doctor Hottipoglu 425 00:25:18,800 --> 00:25:21,359 Speaker 5: decided she was going to attend a lunch. 426 00:25:23,480 --> 00:25:26,520 Speaker 1: We drove down to Cleveland. I'm pretty sure it was 427 00:25:26,520 --> 00:25:28,639 Speaker 1: like the next day or sometime that week. It was 428 00:25:28,680 --> 00:25:31,359 Speaker 1: a very quick turn around, and we were in her 429 00:25:31,400 --> 00:25:34,280 Speaker 1: office like we did an exam. We like talked about 430 00:25:34,880 --> 00:25:37,639 Speaker 1: all the factors that we had in my chart to 431 00:25:37,640 --> 00:25:41,359 Speaker 1: support like a clinical diagnosis. She asked me some questions, 432 00:25:41,400 --> 00:25:44,840 Speaker 1: like I'd always called my muscle weakness weakness, but she 433 00:25:44,960 --> 00:25:47,720 Speaker 1: was like, do you think you could call it a heaviness? 434 00:25:47,760 --> 00:25:50,480 Speaker 1: And I was like, wait, that's an even better word 435 00:25:50,640 --> 00:25:53,720 Speaker 1: that describes exactly what I'm feeling. She asked me about 436 00:25:53,880 --> 00:25:56,199 Speaker 1: if I noticed this heaviness more when it was cold, 437 00:25:56,320 --> 00:26:01,000 Speaker 1: or if I had gone for milkshakes with hot or 438 00:26:01,160 --> 00:26:04,679 Speaker 1: if all these things we would go through, like rest 439 00:26:04,720 --> 00:26:09,000 Speaker 1: after exercise, was that one things got heavier. It's definitely 440 00:26:09,040 --> 00:26:13,960 Speaker 1: those things. Maybe there is a pattern here. She told 441 00:26:13,960 --> 00:26:15,640 Speaker 1: me that I had periodic process. 442 00:26:20,240 --> 00:26:27,800 Speaker 3: Periodic paralysis is the potassium in her body shifts, she 443 00:26:27,920 --> 00:26:33,840 Speaker 3: becomes low potassium. However, the low potassium is not actually real. 444 00:26:34,160 --> 00:26:39,080 Speaker 3: There's a shift from one space to another, so it's 445 00:26:39,119 --> 00:26:43,600 Speaker 3: not like you have a diarrhea. You lose the potassium 446 00:26:43,680 --> 00:26:47,919 Speaker 3: and you have low potassium. This is suddenly from one 447 00:26:47,960 --> 00:26:51,560 Speaker 3: cell to the other, from the blood to the cell. 448 00:26:51,720 --> 00:26:56,679 Speaker 3: It shifts, so you have sudden loss of potassium so 449 00:26:56,920 --> 00:27:01,280 Speaker 3: quick that your body gets paralyzed, because that's what happens 450 00:27:01,280 --> 00:27:02,720 Speaker 3: when you have LOPU test. 451 00:27:03,080 --> 00:27:07,679 Speaker 5: Do you remember what it felt like to confirm that hunch. 452 00:27:08,400 --> 00:27:13,640 Speaker 3: Yes, I remember sending her to neurology to get tested 453 00:27:14,119 --> 00:27:16,560 Speaker 3: for a periodic paralysis, and I. 454 00:27:16,600 --> 00:27:22,880 Speaker 4: Was just fearful because I didn't know, and it was positive. 455 00:27:23,000 --> 00:27:24,160 Speaker 4: It was positive. 456 00:27:25,680 --> 00:27:28,760 Speaker 1: We had from the drug manufacturer the book, the little 457 00:27:28,760 --> 00:27:30,960 Speaker 1: pamphlet about it, and we went through it together because 458 00:27:30,960 --> 00:27:34,879 Speaker 1: she was like, I am not an expert in periodic paralysis, 459 00:27:34,920 --> 00:27:37,080 Speaker 1: but we can learn about this together. There were some 460 00:27:37,200 --> 00:27:39,840 Speaker 1: boss turns along the way, but we figured it out 461 00:27:39,840 --> 00:27:42,240 Speaker 1: together and we always have. That's the thing about her 462 00:27:42,359 --> 00:27:45,399 Speaker 1: is she'll always be in your back, like in your corner. 463 00:27:45,600 --> 00:27:47,680 Speaker 1: Whenever I have a new symptom. I feel like she's 464 00:27:47,720 --> 00:27:50,320 Speaker 1: always the first person who I tell. 465 00:27:51,960 --> 00:27:58,719 Speaker 5: What are some of the telltale triggers of periodic paralysis. 466 00:27:59,119 --> 00:28:03,320 Speaker 3: I absolutely not count myself as an expert, like I 467 00:28:03,359 --> 00:28:06,639 Speaker 3: am an amazing expert in thyroid and diabetes. 468 00:28:06,720 --> 00:28:08,000 Speaker 4: I am not in this field. 469 00:28:08,080 --> 00:28:16,440 Speaker 3: But high carbohydrate meals for example, exercise, for example, stress classically, 470 00:28:16,960 --> 00:28:22,040 Speaker 3: these people can just get paralyzed like that and faint. 471 00:28:22,680 --> 00:28:24,400 Speaker 4: It's quite scary. 472 00:28:24,600 --> 00:28:28,560 Speaker 3: Temperatures as well, the high temperature, yes, and cold temperature 473 00:28:28,600 --> 00:28:30,040 Speaker 3: if you're in the cold as well. 474 00:28:30,160 --> 00:28:34,920 Speaker 5: Yes, that makes so much sense. Sina remembers that during 475 00:28:34,920 --> 00:28:37,760 Speaker 5: a periodic paralysis episode that took place while she was 476 00:28:37,800 --> 00:28:40,960 Speaker 5: performing at her high school band, that she'd been sitting 477 00:28:41,000 --> 00:28:44,560 Speaker 5: directly under a cold air vent and suddenly she couldn't 478 00:28:44,560 --> 00:28:48,000 Speaker 5: move at all. And then the adults thought that she 479 00:28:48,160 --> 00:28:51,040 Speaker 5: might have had low blood sugar or that she was hungry, 480 00:28:51,280 --> 00:28:54,080 Speaker 5: so they gave her a bunch of sugary snack treats 481 00:28:54,440 --> 00:28:59,360 Speaker 5: and it actually made things worse. Yes, it's all there 482 00:28:59,600 --> 00:29:01,080 Speaker 5: in this story. She tells. 483 00:29:01,800 --> 00:29:06,959 Speaker 3: So the fascinating part that some of the illnesses in 484 00:29:07,000 --> 00:29:12,200 Speaker 3: my life that I diagnose this all honestly to. 485 00:29:13,480 --> 00:29:16,480 Speaker 4: One, listen, really listen. 486 00:29:20,440 --> 00:29:26,400 Speaker 3: Almost you get so infused by the patient's experience that 487 00:29:26,480 --> 00:29:30,040 Speaker 3: there is no limit between you and them. At that moment, 488 00:29:30,840 --> 00:29:35,240 Speaker 3: I lose myself almost when I'm listening to the story 489 00:29:35,400 --> 00:29:39,560 Speaker 3: like a great movie, that you're not you anymore, you 490 00:29:39,640 --> 00:29:45,040 Speaker 3: are in the movie. I have huge respect to science. 491 00:29:45,080 --> 00:29:48,240 Speaker 3: I'm a professor, so I did a lot of research. 492 00:29:48,320 --> 00:29:54,160 Speaker 3: I still do, which is very important. However, knowing the 493 00:29:54,200 --> 00:30:03,480 Speaker 3: limitations of science scientific books, accept that medicine still continues 494 00:30:03,560 --> 00:30:06,920 Speaker 3: to be an art, which means you need to be 495 00:30:07,080 --> 00:30:12,440 Speaker 3: flexible in your mind where this could fit. 496 00:30:13,800 --> 00:30:16,560 Speaker 5: I love that medicine is an art, so you have 497 00:30:16,640 --> 00:30:18,320 Speaker 5: to be a creative thinker. 498 00:30:18,560 --> 00:30:25,160 Speaker 3: Absolutely innovative, creative putting things together. Even if this is 499 00:30:25,200 --> 00:30:26,200 Speaker 3: the first time. 500 00:30:27,880 --> 00:30:31,160 Speaker 5: Holly remembers how life changing it was for Sienna to 501 00:30:31,280 --> 00:30:34,960 Speaker 5: finally know exactly what could trigger an episode of paralysis 502 00:30:35,000 --> 00:30:35,360 Speaker 5: in her. 503 00:30:35,960 --> 00:30:38,520 Speaker 2: Previously, we had just been kind of navigating in the dark, 504 00:30:39,000 --> 00:30:41,600 Speaker 2: and so knowing that there was the cold triggers or 505 00:30:41,880 --> 00:30:45,360 Speaker 2: the different triggers that come with it, it just helps 506 00:30:45,400 --> 00:30:50,880 Speaker 2: to give a sense of comfort in knowing that, Okay, 507 00:30:50,920 --> 00:30:53,280 Speaker 2: we can plan for this or we can navigate this space. 508 00:30:53,800 --> 00:30:56,760 Speaker 2: I've gotten to see Sienna learn relearn how to walk 509 00:30:56,960 --> 00:31:00,160 Speaker 2: several times, and being able to see her work with 510 00:31:00,200 --> 00:31:04,920 Speaker 2: her physical therapists after different periodic paralysis attacks to gain 511 00:31:04,960 --> 00:31:05,880 Speaker 2: her strength back. 512 00:31:06,240 --> 00:31:11,920 Speaker 5: Do you remember her reaction when she finally got her diagnosis. 513 00:31:11,560 --> 00:31:17,000 Speaker 3: Huge relief, reassurance she wasn't losing it, It wasn't in 514 00:31:17,080 --> 00:31:21,200 Speaker 3: her head because there was something we could do for it, 515 00:31:22,240 --> 00:31:23,720 Speaker 3: We could treat it. 516 00:31:24,320 --> 00:31:28,600 Speaker 5: So what are some of the ways you have worked 517 00:31:28,960 --> 00:31:32,040 Speaker 5: with Sienna to manage her condition. 518 00:31:32,440 --> 00:31:37,560 Speaker 3: We just started, you know, supplemented potassium, making sure she 519 00:31:37,640 --> 00:31:43,760 Speaker 3: doesn't have pure sugars, avoiding the triggers, as well as 520 00:31:44,000 --> 00:31:45,960 Speaker 3: we tried medications. 521 00:31:46,720 --> 00:31:51,920 Speaker 1: I was started on treatment that week, and I think 522 00:31:51,920 --> 00:31:55,160 Speaker 1: within my peria proalyssis diagnosis, I was super lucky because 523 00:31:55,200 --> 00:31:58,440 Speaker 1: people will go to the er that puriac proalysis for years, 524 00:31:58,480 --> 00:32:01,800 Speaker 1: time after time with these symptoms and these attacks and 525 00:32:01,840 --> 00:32:05,400 Speaker 1: not get help for it. And my diagnosis always felt 526 00:32:05,440 --> 00:32:07,840 Speaker 1: like it kind of fell into my lap because we 527 00:32:07,840 --> 00:32:09,000 Speaker 1: weren't even looking for it. 528 00:32:10,000 --> 00:32:13,120 Speaker 5: As is true with so many things, once we see 529 00:32:13,160 --> 00:32:16,400 Speaker 5: where one piece of the puzzle belongs, the other pieces 530 00:32:16,440 --> 00:32:19,600 Speaker 5: start to make sense. A few years after she was 531 00:32:19,640 --> 00:32:24,880 Speaker 5: diagnosed with periodic paralysis, Siena was also diagnosed with ROHOD, 532 00:32:25,200 --> 00:32:32,560 Speaker 5: which stands for rapid onset obesity with hypothalmic dysfunction, hypoventilation, 533 00:32:33,120 --> 00:32:38,560 Speaker 5: and autonomic dysregulation. Rohod is a rare, life threatening disorder 534 00:32:38,880 --> 00:32:44,480 Speaker 5: that creates breathing problems known as hypoventilation. The condition can 535 00:32:44,520 --> 00:32:48,960 Speaker 5: often lead to death. A few years after Sena was 536 00:32:49,120 --> 00:32:55,400 Speaker 5: diagnosed by you with periodic paralysis, she received an additional diagnosis. 537 00:32:55,760 --> 00:32:58,600 Speaker 5: Did she share that with you? And were you surprised? 538 00:32:59,400 --> 00:33:05,920 Speaker 3: Yes, I was surprised. Periodic paralysis was just a piece 539 00:33:06,280 --> 00:33:11,040 Speaker 3: of what was happening in her entire system. And that 540 00:33:12,160 --> 00:33:17,480 Speaker 3: is usually the case when you are dealing with this 541 00:33:17,880 --> 00:33:22,640 Speaker 3: rare illnesses that starts happening at a very young age, 542 00:33:23,440 --> 00:33:28,840 Speaker 3: and at least you know that other people are helping 543 00:33:28,880 --> 00:33:33,080 Speaker 3: you to make this person have a much better and 544 00:33:33,360 --> 00:33:35,440 Speaker 3: high quality life. 545 00:33:35,640 --> 00:33:38,400 Speaker 5: All those years that Sienna had been passing out and 546 00:33:38,440 --> 00:33:43,200 Speaker 5: losing her vision can be attributed to rohod. So just 547 00:33:43,320 --> 00:33:46,520 Speaker 5: explain how you explain rohad to people. 548 00:33:47,240 --> 00:33:50,160 Speaker 1: So when I explain it to people, we start off 549 00:33:50,200 --> 00:33:54,640 Speaker 1: with my brain not telling me to breathe. My lungs 550 00:33:54,680 --> 00:33:57,560 Speaker 1: work perfectly fine, my brain just doesn't tell them to 551 00:33:57,560 --> 00:33:58,320 Speaker 1: do the breathing thing. 552 00:33:58,680 --> 00:34:01,960 Speaker 3: When you take a deep breath, so you know how 553 00:34:02,080 --> 00:34:07,560 Speaker 3: your chest expands and then you feel good. Some of 554 00:34:07,600 --> 00:34:13,640 Speaker 3: these patients, the DAP fram cannot necessarily expand they have 555 00:34:13,760 --> 00:34:18,880 Speaker 3: to remember to take a deep breath otherwise they don't breathe. 556 00:34:19,480 --> 00:34:24,520 Speaker 3: So by putting a pacemaker, like a heart pacemaker, it 557 00:34:24,600 --> 00:34:26,920 Speaker 3: helps you to breathe better. 558 00:34:28,160 --> 00:34:31,760 Speaker 1: Then we'll talk about like my hypothemis. My hypothemis doesn't 559 00:34:31,760 --> 00:34:35,279 Speaker 1: make all the different levels and hormones and things that 560 00:34:35,400 --> 00:34:38,640 Speaker 1: it should, and so I take steroids and different things 561 00:34:38,640 --> 00:34:41,120 Speaker 1: to make up for that, and a slew of other 562 00:34:41,200 --> 00:34:44,319 Speaker 1: treatments that help the bigger picture for it. And then 563 00:34:44,600 --> 00:34:49,399 Speaker 1: I have autonomic dysfunction or dysregulation from it. And that 564 00:34:49,440 --> 00:34:52,799 Speaker 1: can be anything from passing out to my body not 565 00:34:52,840 --> 00:34:56,480 Speaker 1: controlling my temperature or anything your body does autonomically. Mine 566 00:34:56,560 --> 00:34:58,280 Speaker 1: just doesn't like to do. 567 00:34:58,960 --> 00:35:03,800 Speaker 5: In a weird way. Forcing yourself to breathe, for saxophone 568 00:35:04,520 --> 00:35:07,520 Speaker 5: probably helped that from happening earlier. 569 00:35:07,840 --> 00:35:11,040 Speaker 1: Yeah, I spent so much time every day playing saxophone. 570 00:35:11,239 --> 00:35:13,840 Speaker 1: Some of my doctors are like that probably kept you alive. 571 00:35:14,520 --> 00:35:17,760 Speaker 1: I should have been feeling worse. I'm exerting all this energy, 572 00:35:18,160 --> 00:35:20,319 Speaker 1: and when I stopped playing is when I would start 573 00:35:20,360 --> 00:35:21,040 Speaker 1: passing out. 574 00:35:22,160 --> 00:35:26,640 Speaker 5: I'm sure now that you have answers, it's much easier 575 00:35:26,680 --> 00:35:29,239 Speaker 5: for you to navigate in real time as you feel 576 00:35:29,280 --> 00:35:33,319 Speaker 5: an episode coming on, and also the aftermath of it. 577 00:35:34,080 --> 00:35:36,720 Speaker 1: Yeah, I know what to do. I know what triggers 578 00:35:36,719 --> 00:35:41,720 Speaker 1: to avoid. My service dogs also they consents an attack 579 00:35:41,760 --> 00:35:45,160 Speaker 1: before I have it, about twenty thirty minutes before, which 580 00:35:45,239 --> 00:35:51,279 Speaker 1: is extremely helpful. Having the diagnosis and having that support 581 00:35:51,640 --> 00:35:53,040 Speaker 1: has been life changing. 582 00:35:54,280 --> 00:35:58,200 Speaker 5: Now with the right diagnosis in hand, Sienna has built 583 00:35:58,200 --> 00:36:02,080 Speaker 5: a community and beaten the off She would not die 584 00:36:02,160 --> 00:36:06,960 Speaker 5: before twenty five, far from it. Now thirty one years old, 585 00:36:07,520 --> 00:36:13,640 Speaker 5: Sienna is a testament to living beyond expectations. Holly told me, 586 00:36:14,280 --> 00:36:16,200 Speaker 5: they didn't think you were going to make it to 587 00:36:16,239 --> 00:36:17,440 Speaker 5: the age of twenty five. 588 00:36:18,560 --> 00:36:20,560 Speaker 1: When I went to the Mayo Clinic, I was on 589 00:36:20,640 --> 00:36:24,600 Speaker 1: palliative care before I got my diaphragm pacemaker, and we 590 00:36:24,600 --> 00:36:27,640 Speaker 1: were just doing things to try to keep me alive. 591 00:36:27,719 --> 00:36:30,200 Speaker 1: And when it came down to getting the pacemaker, no 592 00:36:30,200 --> 00:36:31,759 Speaker 1: one knew if I was even going to live through 593 00:36:31,800 --> 00:36:34,160 Speaker 1: the surgery. No one knew if I was going to 594 00:36:34,239 --> 00:36:37,760 Speaker 1: have a twenty fifth birthday. The pacemaker was our hail Mary. 595 00:36:38,160 --> 00:36:40,600 Speaker 1: It was our last try. So after that, all my 596 00:36:40,640 --> 00:36:44,360 Speaker 1: birthdays had become bonus birthdays, which makes them even more magical. 597 00:36:45,080 --> 00:36:49,160 Speaker 2: So twenty five came along, and then twenty six came along. 598 00:36:49,560 --> 00:36:53,799 Speaker 2: And one thing about Sienna that I love is try 599 00:36:53,800 --> 00:36:55,839 Speaker 2: sticking her in a box or try telling her what 600 00:36:55,880 --> 00:37:00,359 Speaker 2: she can't do, give her a challenge, and then watch 601 00:37:00,360 --> 00:37:01,439 Speaker 2: her sore. 602 00:37:05,000 --> 00:37:08,600 Speaker 5: Sienna has time and time again endured challenges at the 603 00:37:08,640 --> 00:37:11,719 Speaker 5: hand of her conditions, and on the eve of her 604 00:37:11,760 --> 00:37:16,280 Speaker 5: thirtieth birthday, Sienna started using a wheelchair almost full time. 605 00:37:16,920 --> 00:37:21,520 Speaker 2: It's a dynamic disability, being able to use the arm 606 00:37:21,560 --> 00:37:25,000 Speaker 2: crutches and then some days use the wheelchair and some days. 607 00:37:24,840 --> 00:37:25,680 Speaker 6: She's be walking. 608 00:37:26,200 --> 00:37:29,880 Speaker 2: But it's just been exciting to see her learn how 609 00:37:29,920 --> 00:37:33,000 Speaker 2: to navigate the world and navigate it so well regardless 610 00:37:33,040 --> 00:37:37,640 Speaker 2: of what mobility aide she has. She walked down the 611 00:37:37,680 --> 00:37:42,160 Speaker 2: aisle at my wedding and we were all crying, and 612 00:37:42,239 --> 00:37:43,400 Speaker 2: it was just really neat. 613 00:37:43,760 --> 00:37:47,520 Speaker 1: I did special physical therapy and works even harder. 614 00:37:48,239 --> 00:37:48,480 Speaker 3: You know. 615 00:37:48,640 --> 00:37:51,120 Speaker 1: She wanted to get married on this mountain, and I 616 00:37:51,239 --> 00:37:54,800 Speaker 1: was like, yeah, let's go. I walked down the aisle 617 00:37:55,000 --> 00:37:57,600 Speaker 1: and I stood up there the whole time, and thankfully 618 00:37:57,640 --> 00:38:00,000 Speaker 1: it was a short ceremony. It was beautiful. 619 00:38:01,000 --> 00:38:04,360 Speaker 6: We can get back to living life, to the fullest. 620 00:38:05,040 --> 00:38:10,400 Speaker 2: She's not letting any timelines, any diagnoses determine who she 621 00:38:11,239 --> 00:38:12,520 Speaker 2: is and who she should be. 622 00:38:14,480 --> 00:38:17,160 Speaker 5: What is the message that you want people to take 623 00:38:17,200 --> 00:38:18,400 Speaker 5: away from your story? 624 00:38:18,920 --> 00:38:23,279 Speaker 1: Having the ability to share my story with all these 625 00:38:23,320 --> 00:38:27,560 Speaker 1: people create change, Claiming a spot in the world for 626 00:38:27,719 --> 00:38:32,000 Speaker 1: people with disabilities that's been hidden for so long, and 627 00:38:32,080 --> 00:38:35,399 Speaker 1: finding each other. I think that's such a special part 628 00:38:35,400 --> 00:38:38,759 Speaker 1: of it. There's so much joy in life every single day, 629 00:38:38,840 --> 00:38:41,160 Speaker 1: no matter what you have or what you're living with. 630 00:38:41,920 --> 00:38:45,439 Speaker 1: Just stopping to smell the roses or dance in the rain, 631 00:38:46,040 --> 00:38:50,560 Speaker 1: and just them knowing that it's not about how much 632 00:38:51,320 --> 00:38:53,680 Speaker 1: time you have in life, but how much life you 633 00:38:53,719 --> 00:38:59,759 Speaker 1: put in the time you have. I'm Sanadetrie and it 634 00:38:59,800 --> 00:39:02,080 Speaker 1: took me twenty six years to find out I have 635 00:39:02,360 --> 00:39:03,760 Speaker 1: clinical periodic paralysis. 636 00:39:05,880 --> 00:39:10,080 Speaker 5: You can learn more about periodic paralysis at periodic paralysis 637 00:39:10,239 --> 00:39:17,000 Speaker 5: dot org. You can follow Sienna at chronically Persevering on Instagram, TikTok, Facebook, 638 00:39:17,080 --> 00:39:21,600 Speaker 5: and YouTube. Coming up on the next episode of Symptomatic, 639 00:39:22,560 --> 00:39:26,120 Speaker 5: rock star Casey McPherson and his family were shocked to 640 00:39:26,160 --> 00:39:29,200 Speaker 5: the core when his daughter Rose was diagnosed with a 641 00:39:29,360 --> 00:39:33,160 Speaker 5: rare genetic mutation that has no known treatment. 642 00:39:34,080 --> 00:39:37,560 Speaker 7: Finally calling my name, going into the small little room, 643 00:39:37,680 --> 00:39:43,840 Speaker 7: and the pediatric neurologist walking in with very little empathy 644 00:39:44,880 --> 00:39:49,440 Speaker 7: and saying, Casey, your daughter has a rare genetic disease, 645 00:39:50,200 --> 00:39:53,480 Speaker 7: and those words ringing in my ears. There's really nothing 646 00:39:53,480 --> 00:39:57,560 Speaker 7: we can do, Casey, you know, other than make her 647 00:39:57,560 --> 00:40:00,919 Speaker 7: comfortable or role that was a pediatric neurologists, Like, where 648 00:40:00,920 --> 00:40:01,719 Speaker 7: else am I going to go? 649 00:40:02,480 --> 00:40:05,800 Speaker 5: Faced with the possibility of losing his daughter? The frontman 650 00:40:05,880 --> 00:40:09,440 Speaker 5: of Flying Colors dropped everything to devote his life to 651 00:40:09,520 --> 00:40:15,560 Speaker 5: trying to find a cure before time runs out. As always, 652 00:40:15,600 --> 00:40:18,000 Speaker 5: we would love to hear from you. Send us your 653 00:40:18,000 --> 00:40:20,880 Speaker 5: thoughts on this episode, or share a medical mystery of 654 00:40:20,920 --> 00:40:26,080 Speaker 5: your own at Symptomatic at iHeartMedia dot com, and please 655 00:40:26,160 --> 00:40:30,120 Speaker 5: rate and review Symptomatic wherever you get your podcasts. We'll 656 00:40:30,120 --> 00:40:35,200 Speaker 5: see you next time and until then, be well. Symptomatic 657 00:40:35,360 --> 00:40:41,000 Speaker 5: a medical mystery podcast is a production of iHeartMedia's Ruby Studio. 658 00:40:41,719 --> 00:40:45,040 Speaker 5: Our show is hosted by me Lauren Bright Pacheco. Our 659 00:40:45,080 --> 00:40:49,960 Speaker 5: executive producers are James Foster, Matt Ramano, and myself. Our 660 00:40:50,000 --> 00:40:56,040 Speaker 5: supervising producers are Ryan Ovadia Haley, Aliah Erickson, and Daniel Ainsworth. 661 00:40:56,800 --> 00:41:00,760 Speaker 5: This episode was written by Haley Aliah Ericsson and edited 662 00:41:00,920 --> 00:41:02,359 Speaker 5: by Daniel Ainsworth.