1 00:00:03,360 --> 00:00:09,320 Speaker 1: Rube. It feels to me as if someone has removed 2 00:00:09,360 --> 00:00:13,280 Speaker 1: all my skin down to like the muscle and then 3 00:00:13,440 --> 00:00:17,800 Speaker 1: covered me in a bull blanket, like a mowhare blanket. 4 00:00:19,440 --> 00:00:22,840 Speaker 2: The thought of this world not having her in it, 5 00:00:23,480 --> 00:00:24,599 Speaker 2: that's just unbearable. 6 00:00:26,239 --> 00:00:29,000 Speaker 3: There'll be in this kind of cycle of trying to 7 00:00:29,040 --> 00:00:32,320 Speaker 3: find relief and really suffering and ending up in the 8 00:00:32,360 --> 00:00:34,440 Speaker 3: emergency room or urgent care. 9 00:00:35,640 --> 00:00:39,000 Speaker 1: And you're always looking over your shoulder, when is this 10 00:00:39,120 --> 00:00:40,000 Speaker 1: going to happen again? 11 00:00:41,720 --> 00:00:45,480 Speaker 4: How terrifying would it be to fight an unknown enemy, 12 00:00:46,000 --> 00:00:50,080 Speaker 4: one you didn't recognize and didn't see coming. What if 13 00:00:50,120 --> 00:00:53,640 Speaker 4: that enemy was coming from within a disease that even 14 00:00:53,800 --> 00:00:59,320 Speaker 4: doctors couldn't identify. Nearly half of Americans suffer from some 15 00:00:59,520 --> 00:01:05,200 Speaker 4: chronic and many struggle for an accurate diagnosis. These are 16 00:01:05,240 --> 00:01:10,080 Speaker 4: their stories. I'm Lauren brag Pacheco, and this is symptomatic. 17 00:01:17,400 --> 00:01:18,800 Speaker 5: My name is Kristin Willard. 18 00:01:19,080 --> 00:01:23,000 Speaker 1: I am the executive director at We See You, which 19 00:01:23,120 --> 00:01:27,440 Speaker 1: is a US nonprofit, and I also oversee education for 20 00:01:27,640 --> 00:01:32,360 Speaker 1: an organization called GAP, the Global Allergy and Airways Patient Platform. 21 00:01:32,440 --> 00:01:36,640 Speaker 4: An excellent listener, full of curiosity about others. Kristin is 22 00:01:36,840 --> 00:01:39,959 Speaker 4: one of those people who immediately feels like an old friend. 23 00:01:40,440 --> 00:01:43,520 Speaker 4: She loves dogs, has a thirst for knowledge, and is 24 00:01:43,640 --> 00:01:48,840 Speaker 4: driven by a desire to help others. Kristin where are 25 00:01:48,880 --> 00:01:50,120 Speaker 4: you originally from? 26 00:01:50,760 --> 00:01:54,720 Speaker 1: I grew up in northern New Jersey, which I think 27 00:01:54,840 --> 00:01:57,360 Speaker 1: is one of the most wonderful places on the planet 28 00:01:57,440 --> 00:01:58,120 Speaker 1: to grow up. 29 00:01:58,320 --> 00:01:59,920 Speaker 5: Despite what you might hear from me. 30 00:02:01,200 --> 00:02:03,080 Speaker 1: You know, we had the butt of many jokes, but 31 00:02:03,160 --> 00:02:05,600 Speaker 1: I really think it was an absolutely delightful place to 32 00:02:05,640 --> 00:02:09,359 Speaker 1: grow up. Where in Northern New Jersey in Morris County, 33 00:02:09,480 --> 00:02:12,160 Speaker 1: I grew up in Whippany. When I was growing up, 34 00:02:12,200 --> 00:02:14,919 Speaker 1: I had the luxury to move to Europe a few 35 00:02:14,919 --> 00:02:18,040 Speaker 1: times with my family because of my father's job. I 36 00:02:18,080 --> 00:02:22,320 Speaker 1: spent my first and second grade years in England and 37 00:02:22,400 --> 00:02:27,520 Speaker 1: sixth grade in Paris and in Belgium, and that was 38 00:02:27,960 --> 00:02:30,239 Speaker 1: I think one of the things that got me interested 39 00:02:30,520 --> 00:02:37,359 Speaker 1: in working globally and in helping people sort of outside myself, 40 00:02:37,480 --> 00:02:38,760 Speaker 1: an outside of my backyard. 41 00:02:39,800 --> 00:02:43,640 Speaker 4: I hear you're a woman of many hobbies. I'm a 42 00:02:43,680 --> 00:02:47,080 Speaker 4: bit of a true crime enthusiast. I think that my 43 00:02:47,120 --> 00:02:49,760 Speaker 4: friends would probably say that's the understatement of the year. 44 00:02:49,880 --> 00:02:51,960 Speaker 4: To be honest, it is the rabbit hole I go 45 00:02:52,120 --> 00:02:54,720 Speaker 4: down when I should be sleeping because I have an 46 00:02:54,720 --> 00:02:59,040 Speaker 4: eight am meeting. What draws you to true crime? 47 00:02:59,600 --> 00:03:04,320 Speaker 1: My formal training is actually in clinical psychology, and I 48 00:03:04,480 --> 00:03:08,480 Speaker 1: had entered my graduate program wanting to be a forensic psychologist. 49 00:03:08,520 --> 00:03:10,919 Speaker 1: But I also think it's because of my interest in 50 00:03:10,960 --> 00:03:13,400 Speaker 1: other humans and understanding how they tick. 51 00:03:14,720 --> 00:03:18,160 Speaker 4: So how did you make the leap from forensic psychology 52 00:03:18,240 --> 00:03:20,120 Speaker 4: to working in patient advocacy? 53 00:03:20,919 --> 00:03:21,840 Speaker 5: In my twenties. 54 00:03:21,919 --> 00:03:25,480 Speaker 1: I was working as a research assistant at Georgetown University 55 00:03:26,080 --> 00:03:28,800 Speaker 1: for three years before I went to graduate school in Florida, 56 00:03:29,280 --> 00:03:33,080 Speaker 1: and in graduate school, I was actually working in epilepsy research. 57 00:03:33,160 --> 00:03:35,480 Speaker 1: So health has always been my interest. 58 00:03:36,560 --> 00:03:42,240 Speaker 4: Looking back at your childhood, were there any indications of 59 00:03:42,680 --> 00:03:46,080 Speaker 4: what kind of health issues you would encounter in your twenties? 60 00:03:46,720 --> 00:03:50,800 Speaker 1: No, no precursors. The first symptoms were in my twenties. 61 00:03:51,440 --> 00:03:54,800 Speaker 1: I can say truthfully that I had no inkling of 62 00:03:54,840 --> 00:03:55,840 Speaker 1: what was to come. 63 00:03:58,960 --> 00:04:01,600 Speaker 4: All right, let's dive into that a little bit. You're 64 00:04:01,800 --> 00:04:04,040 Speaker 4: at that point living in Arlington. 65 00:04:04,080 --> 00:04:06,600 Speaker 5: That's correct. This is in the early nineties. 66 00:04:06,680 --> 00:04:09,520 Speaker 1: I was living just outside of DC and working my 67 00:04:09,640 --> 00:04:11,720 Speaker 1: first job ever, which was very exciting. 68 00:04:11,760 --> 00:04:12,360 Speaker 5: In the city. 69 00:04:12,640 --> 00:04:15,760 Speaker 1: I went to a local laundromat, and I was in 70 00:04:15,760 --> 00:04:20,040 Speaker 1: my twenties, so I was not particular about what kind 71 00:04:20,120 --> 00:04:23,039 Speaker 1: of products I used, or detergents or anything along all 72 00:04:23,040 --> 00:04:26,640 Speaker 1: those lines. In those days, whatever was the least expensive. 73 00:04:27,800 --> 00:04:29,640 Speaker 1: I washed my clothes. 74 00:04:29,320 --> 00:04:32,599 Speaker 5: At the laundromat, came home, and the next day. 75 00:04:32,480 --> 00:04:37,279 Speaker 1: I woke up with a rash, a bright red, itchy 76 00:04:37,480 --> 00:04:41,080 Speaker 1: rash in the exact shape of my bra and underwear. 77 00:04:42,279 --> 00:04:44,760 Speaker 5: I called my mom, can you tell me what this is? 78 00:04:44,920 --> 00:04:47,360 Speaker 5: You know? What she'd said to me was it was easy, 79 00:04:48,440 --> 00:04:49,520 Speaker 5: was too strong for you? 80 00:04:50,720 --> 00:04:54,239 Speaker 1: So I went into urgent care and they quickly gave 81 00:04:54,320 --> 00:04:57,239 Speaker 1: me steroids and told me to use anahistamines. 82 00:04:58,120 --> 00:05:01,480 Speaker 4: You said that it was in the exact location of 83 00:05:01,520 --> 00:05:06,320 Speaker 4: your undergarments, but was the skin warm to the touch? 84 00:05:07,000 --> 00:05:08,520 Speaker 5: It does feel warm to the touch. 85 00:05:08,880 --> 00:05:12,080 Speaker 1: I think the most striking characteristic, though, is the itch. 86 00:05:12,720 --> 00:05:17,840 Speaker 1: The itch is incessant. It isn't something like a sunburn 87 00:05:17,920 --> 00:05:20,440 Speaker 1: where you can feel it and you can see it, 88 00:05:21,160 --> 00:05:25,440 Speaker 1: but that it is tolerable if you're not moving. It 89 00:05:25,560 --> 00:05:27,560 Speaker 1: sort of consumes all of you because the itch is 90 00:05:27,600 --> 00:05:28,279 Speaker 1: so strong. 91 00:05:29,880 --> 00:05:36,440 Speaker 4: So since that was your first outbreak or episode, did 92 00:05:36,480 --> 00:05:39,200 Speaker 4: they look at it and just to attribute it directly 93 00:05:39,400 --> 00:05:40,680 Speaker 4: to the detergent. 94 00:05:41,160 --> 00:05:45,360 Speaker 1: Yes, I think so, especially because the evidence was so specific, 95 00:05:45,520 --> 00:05:48,680 Speaker 1: because it was in the shape of my undergarments. They 96 00:05:48,680 --> 00:05:50,920 Speaker 1: thought they were on the right track. Let's make sure 97 00:05:50,960 --> 00:05:53,640 Speaker 1: the symptoms go away. And they did, and they go 98 00:05:53,680 --> 00:05:57,000 Speaker 1: away for quite a long time actually, before they pop 99 00:05:57,120 --> 00:05:57,479 Speaker 1: up again. 100 00:05:58,400 --> 00:06:00,840 Speaker 5: I thought I was home free. 101 00:06:01,920 --> 00:06:05,320 Speaker 4: Thinking that this strange rash was just a one time 102 00:06:05,400 --> 00:06:09,400 Speaker 4: fluke an allergic reaction. Kristin makes a note to avoid 103 00:06:09,560 --> 00:06:12,960 Speaker 4: that specific detergent, and she goes on with her life. 104 00:06:13,440 --> 00:06:16,200 Speaker 4: Her career blossoms as she finds her purpose working in 105 00:06:16,279 --> 00:06:20,160 Speaker 4: patient advocacy alongside the person that would quickly become her 106 00:06:20,200 --> 00:06:25,200 Speaker 4: best friend, Stephanie. How long have you known Kristin? Tell 107 00:06:25,240 --> 00:06:27,320 Speaker 4: me when and where you first met. 108 00:06:27,680 --> 00:06:31,600 Speaker 2: We met at our past job. We both started at 109 00:06:31,600 --> 00:06:35,040 Speaker 2: this new job about a week apart, and so we've 110 00:06:35,040 --> 00:06:37,719 Speaker 2: known each other for about ten years. And you know, 111 00:06:37,760 --> 00:06:39,560 Speaker 2: I think sometimes your work friends are some of your 112 00:06:39,600 --> 00:06:42,159 Speaker 2: closest friends, and I think that's maybe true for us. 113 00:06:42,880 --> 00:06:46,960 Speaker 4: So what were your first impressions of Kristin? 114 00:06:47,760 --> 00:06:51,919 Speaker 2: She is really such a joy to be around. I 115 00:06:51,960 --> 00:06:55,080 Speaker 2: mean just as a person. As a coworker, she's fantastic. 116 00:06:55,320 --> 00:06:59,760 Speaker 2: She is dedicated and she is determined. If you need anything, 117 00:06:59,800 --> 00:07:04,760 Speaker 2: she there. I describe her as sunshine. She really is 118 00:07:05,000 --> 00:07:08,920 Speaker 2: just one of the most beautiful people I've ever met. 119 00:07:09,320 --> 00:07:12,160 Speaker 4: So, outside of your work, what are some things that 120 00:07:12,200 --> 00:07:13,240 Speaker 4: you too have in common? 121 00:07:13,600 --> 00:07:19,320 Speaker 2: We love animals, we love true crime, we're foodies, we're vegetarians. 122 00:07:19,440 --> 00:07:21,200 Speaker 2: We joke that we share a brain. 123 00:07:21,960 --> 00:07:25,960 Speaker 4: And you found your way to patient advocacy because your 124 00:07:26,000 --> 00:07:27,200 Speaker 4: background is in healthcare. 125 00:07:27,520 --> 00:07:33,200 Speaker 2: Yeah, so I have been in healthcare for around twenty 126 00:07:33,280 --> 00:07:36,000 Speaker 2: ish years. I started out as a nursing student, and 127 00:07:36,040 --> 00:07:38,200 Speaker 2: then I switched over and became a respiratory therapist and 128 00:07:38,240 --> 00:07:39,440 Speaker 2: I've loved it ever since. 129 00:07:42,880 --> 00:07:47,320 Speaker 4: Nearly a decade after the laundry detergent incident, Kristin has 130 00:07:47,400 --> 00:07:52,440 Speaker 4: hit out of nowhere with another mysterious rash. When was 131 00:07:52,520 --> 00:07:53,440 Speaker 4: the next incident? 132 00:07:54,200 --> 00:07:57,880 Speaker 1: The next instance was in my thirties, and this rash 133 00:07:57,920 --> 00:08:01,680 Speaker 1: made itself seen everywhere. It was known by anybody who 134 00:08:01,720 --> 00:08:05,760 Speaker 1: would see me, and the rash would migrate all over 135 00:08:05,840 --> 00:08:06,480 Speaker 1: my body. 136 00:08:07,080 --> 00:08:10,880 Speaker 4: So this time the rash hasn't stuck to one location. 137 00:08:10,920 --> 00:08:11,680 Speaker 5: That's correct. 138 00:08:11,760 --> 00:08:15,400 Speaker 1: So sometimes it was on my face, then in two 139 00:08:15,440 --> 00:08:17,400 Speaker 1: hours on both of my legs. 140 00:08:17,440 --> 00:08:18,800 Speaker 5: The entirety of my legs. 141 00:08:19,200 --> 00:08:25,880 Speaker 1: Sometimes it's accompanied by swelling that is so significant that 142 00:08:25,960 --> 00:08:29,360 Speaker 1: it causes pain. It almost makes your hands and your 143 00:08:29,400 --> 00:08:34,319 Speaker 1: feet feel like sausages, like you're shoved so tightly into 144 00:08:34,320 --> 00:08:36,400 Speaker 1: this casing that you might burst. 145 00:08:37,200 --> 00:08:39,079 Speaker 5: So it was very different. 146 00:08:39,480 --> 00:08:43,520 Speaker 4: From this point on. This inexplicable rash comes back regularly, 147 00:08:44,080 --> 00:08:48,040 Speaker 4: and it lingers for days or even weeks at a time. 148 00:08:48,360 --> 00:08:50,160 Speaker 4: It's impact unbearable. 149 00:08:50,840 --> 00:08:54,400 Speaker 1: When I have one of these episodes, my skin is 150 00:08:54,800 --> 00:09:03,960 Speaker 1: covered in inflamed, well just very red. Your skin looks angry, 151 00:09:04,240 --> 00:09:08,200 Speaker 1: very red, sometimes almost purple, and much of the time 152 00:09:08,640 --> 00:09:12,040 Speaker 1: the skin is actually raised up. It feels to me 153 00:09:12,200 --> 00:09:15,560 Speaker 1: as if someone has removed all my skin truly, I 154 00:09:15,600 --> 00:09:19,080 Speaker 1: mean all my skin down to like the muscle, and 155 00:09:19,120 --> 00:09:23,760 Speaker 1: then covered me in a wool blanket, like a mowhair blanket. 156 00:09:25,240 --> 00:09:29,600 Speaker 1: And when you can imagine that, right, it makes more 157 00:09:29,720 --> 00:09:32,800 Speaker 1: sense as to why you can't cook for yourself, you 158 00:09:32,840 --> 00:09:36,560 Speaker 1: can't drive yourself, you can't you know, going to a 159 00:09:36,600 --> 00:09:39,040 Speaker 1: party would be out of the question because I couldn't 160 00:09:39,040 --> 00:09:41,760 Speaker 1: even get off the couch. I couldn't even get showered. 161 00:09:43,040 --> 00:09:46,720 Speaker 4: Kristin is desperate not to let these debilitating flares derail 162 00:09:46,800 --> 00:09:50,880 Speaker 4: her entire life, but they continue to pop up unexpectedly 163 00:09:51,240 --> 00:09:55,840 Speaker 4: in impossible moments. Stephanie recalls the first time she witnessed 164 00:09:55,840 --> 00:09:57,480 Speaker 4: to set an outbreak in person. 165 00:09:58,400 --> 00:10:01,560 Speaker 2: The first time I saw her with some of the 166 00:10:01,559 --> 00:10:04,960 Speaker 2: inflammation in place. We were actually on a work trip 167 00:10:05,440 --> 00:10:10,000 Speaker 2: in Chicago, and it was bitterly cold, and we had 168 00:10:10,080 --> 00:10:13,040 Speaker 2: checked into the hotel. And the next morning she knocked 169 00:10:13,080 --> 00:10:16,560 Speaker 2: on my door and I opened the door, and there 170 00:10:16,600 --> 00:10:21,760 Speaker 2: she stood with her eyes almost swollen shut. It was 171 00:10:22,040 --> 00:10:25,920 Speaker 2: just the most painful thing that I had ever seen. 172 00:10:26,320 --> 00:10:28,920 Speaker 4: Kristen Treizer. Best to find some sort of pattern that 173 00:10:29,040 --> 00:10:32,440 Speaker 4: is leading to the outbreaks. What are you told is 174 00:10:32,559 --> 00:10:33,200 Speaker 4: triggering it? 175 00:10:33,960 --> 00:10:36,760 Speaker 1: I tried to find out, Lauren. I thought, oh, they 176 00:10:36,840 --> 00:10:40,000 Speaker 1: must be from food. There must be something in my environment. 177 00:10:40,240 --> 00:10:42,600 Speaker 1: Maybe it's someone's pet with whom I interact. 178 00:10:42,640 --> 00:10:43,120 Speaker 5: Who knows. 179 00:10:43,880 --> 00:10:48,960 Speaker 1: I saw an allergist and we looked for everything. I 180 00:10:49,000 --> 00:10:52,720 Speaker 1: had exhaust of allergy testing, I had blood work. I 181 00:10:52,920 --> 00:10:55,920 Speaker 1: would track the things I ate. I tracked things I 182 00:10:55,960 --> 00:11:00,200 Speaker 1: was exposed to. I used detergents that were free and clear. 183 00:11:00,440 --> 00:11:04,400 Speaker 1: I stayed away from perfumes, all of these types of things. 184 00:11:04,440 --> 00:11:06,720 Speaker 1: There was a time in my thirties where I was 185 00:11:06,760 --> 00:11:08,920 Speaker 1: convinced that it was old Bay seasoning. 186 00:11:09,600 --> 00:11:13,600 Speaker 4: Can you just talk to me about what testing you 187 00:11:13,640 --> 00:11:15,560 Speaker 4: went through and what the results were. 188 00:11:16,280 --> 00:11:19,160 Speaker 1: I had what I consider a very traditional test where 189 00:11:19,640 --> 00:11:23,680 Speaker 1: they do pinpricks on your skin, so they mapped out 190 00:11:23,760 --> 00:11:28,080 Speaker 1: my back and did quite an extensive panel I would 191 00:11:28,120 --> 00:11:32,800 Speaker 1: guess at least thirty, maybe thirty or forty different tests, 192 00:11:32,840 --> 00:11:38,240 Speaker 1: and it came back absolutely negative for everything, everything. 193 00:11:38,280 --> 00:11:40,040 Speaker 5: And I was really shocked. 194 00:11:40,679 --> 00:11:42,839 Speaker 1: I still thought it was an allergy, but I just 195 00:11:42,920 --> 00:11:45,360 Speaker 1: thought we hadn't found out what that allergy was yet. 196 00:11:46,040 --> 00:11:49,680 Speaker 4: In a desperate attempt to help her friend Stephanie joins 197 00:11:49,720 --> 00:11:54,160 Speaker 4: the hunt for clues. Both of you guys are true crime, Yes, 198 00:11:54,400 --> 00:11:58,960 Speaker 4: armchair detectives of sorts. Did you guys apply that skill 199 00:11:59,600 --> 00:12:02,960 Speaker 4: to try to figure out what was causing these outbreaks? 200 00:12:03,200 --> 00:12:06,040 Speaker 2: We absolutely did. I mean we were trying to apply 201 00:12:06,240 --> 00:12:09,880 Speaker 2: all of the different learnings through all the years and 202 00:12:10,000 --> 00:12:13,600 Speaker 2: come up with answers, but none of the things that 203 00:12:13,640 --> 00:12:16,080 Speaker 2: we would come up with would actually be helpful. 204 00:12:16,520 --> 00:12:20,280 Speaker 4: Kristen feels if she can just isolate the trigger, if 205 00:12:20,280 --> 00:12:22,320 Speaker 4: she can just get to the bottom of what is 206 00:12:22,400 --> 00:12:25,560 Speaker 4: causing the flare ups, she can defend herself from attack, 207 00:12:26,120 --> 00:12:29,040 Speaker 4: but try as she might, the rash returns. 208 00:12:30,040 --> 00:12:32,680 Speaker 1: I don't know what this is, what's causing it, but 209 00:12:32,720 --> 00:12:35,520 Speaker 1: I'm sure I was exposing myself to an allergen. I 210 00:12:35,640 --> 00:12:37,640 Speaker 1: was sure that was it, and particularly because of what 211 00:12:37,679 --> 00:12:40,200 Speaker 1: happened in my twenties, that was really obvious as to 212 00:12:40,240 --> 00:12:41,120 Speaker 1: what had caused it. 213 00:12:41,720 --> 00:12:43,760 Speaker 5: And I was furious. 214 00:12:43,280 --> 00:12:45,160 Speaker 1: Because I'm so methodical that I was, like, I have 215 00:12:45,240 --> 00:12:48,200 Speaker 1: eliminated that detergent and I make sure I don't even 216 00:12:48,240 --> 00:12:50,840 Speaker 1: touch it when I go to friends' houses. So how 217 00:12:51,200 --> 00:12:56,760 Speaker 1: what else is there? Like everything becomes a potential demon right. 218 00:12:57,200 --> 00:13:01,120 Speaker 4: When you're desperate for an answer her as to what's 219 00:13:01,440 --> 00:13:05,120 Speaker 4: bringing something on that it's very difficult to keep your 220 00:13:05,120 --> 00:13:09,960 Speaker 4: mind from jumping at conclusions as to anything. 221 00:13:10,360 --> 00:13:13,200 Speaker 1: And I think you want so badly to figure it 222 00:13:13,280 --> 00:13:16,680 Speaker 1: out so that you can stop it from happening again 223 00:13:16,720 --> 00:13:17,320 Speaker 1: in the future. 224 00:13:17,520 --> 00:13:20,480 Speaker 2: All you want to do is find the thing, find 225 00:13:20,640 --> 00:13:22,920 Speaker 2: the magic wand that's going to take all of this away, 226 00:13:23,360 --> 00:13:25,360 Speaker 2: And we just couldn't find it. 227 00:13:26,280 --> 00:13:31,880 Speaker 4: Was it more frustrating for you because of your area 228 00:13:31,920 --> 00:13:35,920 Speaker 4: of expertise. Did you blame yourself for not being able 229 00:13:35,960 --> 00:13:40,000 Speaker 4: to figure it out on your own? On some levels, It's. 230 00:13:39,880 --> 00:13:44,120 Speaker 1: Very interesting because I have some expertise in this area, 231 00:13:44,600 --> 00:13:48,440 Speaker 1: but I think when I became like every other person 232 00:13:48,640 --> 00:13:51,760 Speaker 1: or patient, your other hats go out the window. At 233 00:13:51,840 --> 00:13:55,640 Speaker 1: least they did for me at the time, and I 234 00:13:55,640 --> 00:14:00,480 Speaker 1: think I was so incapacitated by the symptoms that it 235 00:14:00,520 --> 00:14:02,839 Speaker 1: was more just you know, fight or flight. 236 00:14:04,720 --> 00:14:08,360 Speaker 3: So itch is a huge deal, right. 237 00:14:08,880 --> 00:14:12,640 Speaker 4: That's doctor pil Gupta. Doctor Gupta is a Triple Board 238 00:14:12,640 --> 00:14:16,560 Speaker 4: certified allergy and immunology specialist. She is also the co 239 00:14:16,640 --> 00:14:18,439 Speaker 4: host of the Itch Podcast. 240 00:14:19,240 --> 00:14:22,520 Speaker 3: I actually am the classic allergist. I suffer from a 241 00:14:22,520 --> 00:14:26,000 Speaker 3: lot of allergies. I have asthma, I have allergies of 242 00:14:26,040 --> 00:14:30,359 Speaker 3: my eyes and nose to pollen, to cats, to other animals, 243 00:14:30,560 --> 00:14:34,560 Speaker 3: and I also have ezema. It is a complicated symptom 244 00:14:34,840 --> 00:14:39,360 Speaker 3: and it's related to nerve fibers in the skin that 245 00:14:39,560 --> 00:14:42,880 Speaker 3: send a signal to the brain, which can be triggered 246 00:14:42,960 --> 00:14:46,560 Speaker 3: by many things. And sometimes it can be a vicious 247 00:14:46,640 --> 00:14:50,120 Speaker 3: cycle where the more you scratch that itch, the worse 248 00:14:50,680 --> 00:14:53,520 Speaker 3: those nerve fibers get, and so then you get even 249 00:14:53,600 --> 00:14:56,520 Speaker 3: more itching. It's a vicious cycle for the patients. 250 00:14:57,080 --> 00:15:00,280 Speaker 4: Years go by, and Kristin is still living with these 251 00:15:00,360 --> 00:15:04,520 Speaker 4: unexplained flare ups that hit her without warning. Now, these 252 00:15:04,560 --> 00:15:08,440 Speaker 4: periods of whole body rashes are lasting months at a time, 253 00:15:08,800 --> 00:15:13,240 Speaker 4: and Kristen's doctors are still stumped. Here's Stephanie's recollection of 254 00:15:13,320 --> 00:15:13,960 Speaker 4: that period. 255 00:15:14,960 --> 00:15:17,600 Speaker 2: There was a long period of time where they were 256 00:15:17,760 --> 00:15:23,280 Speaker 2: prescribing a kind of regiment of proton pump inhibitors, anahistamines, 257 00:15:23,360 --> 00:15:26,520 Speaker 2: and all sorts of anti inflammatories to see if they 258 00:15:26,520 --> 00:15:28,320 Speaker 2: could just reduce some of the inflammation. 259 00:15:29,000 --> 00:15:32,400 Speaker 4: Was there anything that was giving you relief? 260 00:15:33,000 --> 00:15:36,440 Speaker 1: By I would guess my thirties, maybe my forties, I 261 00:15:36,480 --> 00:15:39,040 Speaker 1: had introduced fomoddine into the equation. 262 00:15:39,600 --> 00:15:41,120 Speaker 4: What is that it's. 263 00:15:40,960 --> 00:15:44,680 Speaker 1: More commonly known when by brand names like pepsid. And 264 00:15:45,520 --> 00:15:49,920 Speaker 1: I had also used soaks that you can use for 265 00:15:50,000 --> 00:15:53,080 Speaker 1: your skin to calm irritation, that you can use in 266 00:15:53,120 --> 00:15:56,280 Speaker 1: the bath, things like oatmeal baths, and there are other 267 00:15:56,320 --> 00:15:58,400 Speaker 1: soaks that you can buy over the counter to use. 268 00:15:58,440 --> 00:16:00,880 Speaker 1: And I did find that that would be helpful. Sometimes 269 00:16:00,880 --> 00:16:03,240 Speaker 1: I would even just be on the couch with a 270 00:16:03,320 --> 00:16:08,200 Speaker 1: tupperware of cold water and use a washcloth against my skin, 271 00:16:08,280 --> 00:16:09,520 Speaker 1: and that felt quite good. 272 00:16:09,760 --> 00:16:11,400 Speaker 5: And I'm not sure it did anything, but it did 273 00:16:11,440 --> 00:16:12,440 Speaker 5: feel good. In the moment. 274 00:16:12,880 --> 00:16:15,480 Speaker 4: What was that time like on a day to day basis, 275 00:16:15,640 --> 00:16:18,200 Speaker 4: as you're just trying to live your life. 276 00:16:19,200 --> 00:16:20,200 Speaker 5: You really do adjust. 277 00:16:20,720 --> 00:16:24,280 Speaker 1: You are driving your car, you are walking your dog, 278 00:16:24,560 --> 00:16:29,760 Speaker 1: you are going to birthday parties, but you still have hives. Right, 279 00:16:30,280 --> 00:16:33,960 Speaker 1: So it was almost like if you would get prank 280 00:16:34,080 --> 00:16:35,920 Speaker 1: calls when you were younger, and you didn't know where 281 00:16:35,920 --> 00:16:38,600 Speaker 1: they were coming from, and you were always looking over. 282 00:16:38,400 --> 00:16:41,360 Speaker 5: Your shoulder, When is this going to happen again? 283 00:16:41,800 --> 00:16:44,560 Speaker 2: It was never ending, you know, all day long. She 284 00:16:44,600 --> 00:16:47,840 Speaker 2: would be in such misery, all night long, she would 285 00:16:47,840 --> 00:16:50,360 Speaker 2: be in such misery. So here she is trying to 286 00:16:50,360 --> 00:16:53,280 Speaker 2: make it through her day and be a professional, be 287 00:16:54,160 --> 00:16:57,640 Speaker 2: her normal self to everyone on the outside, you know, 288 00:16:57,680 --> 00:17:00,400 Speaker 2: and not let them know that there's anything going going on. 289 00:17:01,160 --> 00:17:04,040 Speaker 2: That in and of itself is exhausting. She's trying to 290 00:17:04,080 --> 00:17:07,000 Speaker 2: meet all the demands of her day, having little to 291 00:17:07,080 --> 00:17:10,960 Speaker 2: no sleep because she's so miserable all night long. There's 292 00:17:11,040 --> 00:17:13,440 Speaker 2: only so much of that that a person can deal 293 00:17:13,480 --> 00:17:15,800 Speaker 2: with before you get to the breaking point. It's just 294 00:17:15,920 --> 00:17:19,200 Speaker 2: more than people are built for. Honestly, it is torture. 295 00:17:20,800 --> 00:17:25,639 Speaker 1: What was the lowest point for you? I can remember 296 00:17:25,640 --> 00:17:30,600 Speaker 1: it very vividly. This was in my forties and I 297 00:17:30,720 --> 00:17:34,520 Speaker 1: was on the couch, and I was so miserable that 298 00:17:34,600 --> 00:17:40,040 Speaker 1: I remember thinking to myself, I understand why people kill themselves, 299 00:17:42,080 --> 00:17:45,239 Speaker 1: and I didn't think I would do it. I just 300 00:17:45,280 --> 00:17:49,280 Speaker 1: remember thinking to myself that I understood how they could 301 00:17:49,280 --> 00:17:52,200 Speaker 1: feel like there was no future if it didn't stop. 302 00:17:53,160 --> 00:17:57,640 Speaker 4: We'll be right back with Symptomatic, a medical mystery podcast. 303 00:17:59,080 --> 00:18:05,040 Speaker 4: Now back to Some a medical mystery podcast. Kristin Willard 304 00:18:05,119 --> 00:18:09,480 Speaker 4: has been living with pain and unpredictable rashes for two decades. 305 00:18:09,520 --> 00:18:12,200 Speaker 4: At this point, these flares show up on her doorstep 306 00:18:12,280 --> 00:18:16,160 Speaker 4: with no warning, staying for months on end. She's tried 307 00:18:16,280 --> 00:18:20,719 Speaker 4: everything to figure out what triggers their arrival, allergen panel tests, 308 00:18:20,840 --> 00:18:25,879 Speaker 4: changes in diets, avoiding fragrance, becoming increasingly selective on what 309 00:18:26,000 --> 00:18:29,720 Speaker 4: is going in or near her body, but her efforts 310 00:18:29,760 --> 00:18:34,240 Speaker 4: have no impact, covered in excruciating welts that itch constantly, 311 00:18:34,800 --> 00:18:38,000 Speaker 4: with no clues or patterns to be found relating to 312 00:18:38,040 --> 00:18:41,800 Speaker 4: their cause. Now in her forties, Kristin has lost hope 313 00:18:41,840 --> 00:18:45,480 Speaker 4: that she will ever find answers and is living in 314 00:18:45,560 --> 00:18:49,440 Speaker 4: her horrendous discomfort, looking down a tunnel with little light 315 00:18:49,560 --> 00:18:50,240 Speaker 4: at the end. 316 00:18:52,840 --> 00:18:56,760 Speaker 1: I was on the couch and I was so miserable 317 00:18:56,800 --> 00:19:01,520 Speaker 1: that I remember thinking to myself, I undersunderstand why people 318 00:19:01,680 --> 00:19:06,200 Speaker 1: kill themselves. I understood how they could feel like there 319 00:19:06,280 --> 00:19:10,359 Speaker 1: was no future if it didn't stop. People will often 320 00:19:10,600 --> 00:19:15,960 Speaker 1: compare my symptoms to many mosquito bites, and I think 321 00:19:16,000 --> 00:19:18,720 Speaker 1: to myself, no, no, no, no, I have had many 322 00:19:18,760 --> 00:19:21,800 Speaker 1: many mosquito bites at one time before. No one ever 323 00:19:21,840 --> 00:19:25,320 Speaker 1: describes many mosquito bites as feeling like they've been skinned alive. 324 00:19:26,400 --> 00:19:28,560 Speaker 1: I think it is very hard for people to understand. 325 00:19:28,920 --> 00:19:31,000 Speaker 1: I think the thought is real. Take an antihistamine and 326 00:19:31,040 --> 00:19:36,160 Speaker 1: they will go away, and so I think it's the duration, 327 00:19:36,480 --> 00:19:39,119 Speaker 1: the severity. Those things are really hard for anyone who 328 00:19:39,200 --> 00:19:43,160 Speaker 1: hasn't experienced these to wrap their mind around. And that's 329 00:19:43,200 --> 00:19:47,280 Speaker 1: not their fault. I would go years without flares. But 330 00:19:47,359 --> 00:19:50,720 Speaker 1: it is hard to impress upon people just how debilitating 331 00:19:50,760 --> 00:19:51,080 Speaker 1: it is. 332 00:19:54,720 --> 00:19:59,320 Speaker 4: When Kristen opens up about her experience, Stephanie is hit 333 00:19:59,480 --> 00:20:01,000 Speaker 4: with the wait of her pain. 334 00:20:01,320 --> 00:20:04,639 Speaker 2: When she would talk about what she was going through, 335 00:20:08,080 --> 00:20:10,160 Speaker 2: When she would talk about what she was going through 336 00:20:10,320 --> 00:20:18,280 Speaker 2: and really letting me know about how uncomfortable she was, 337 00:20:18,480 --> 00:20:25,680 Speaker 2: not just in the moment within the framework of this 338 00:20:25,760 --> 00:20:28,160 Speaker 2: is happening and I can't control it, and I can't 339 00:20:28,200 --> 00:20:31,159 Speaker 2: stop it, and if this is the way this is 340 00:20:31,200 --> 00:20:36,359 Speaker 2: going to be, I don't know that I can endure 341 00:20:36,400 --> 00:20:41,280 Speaker 2: this or I want to endure this. And she would 342 00:20:41,320 --> 00:20:48,320 Speaker 2: just express this exasperation, you know, just truly exasperated, and 343 00:20:49,359 --> 00:20:54,359 Speaker 2: I think for most people being able to convey that 344 00:20:54,520 --> 00:20:58,640 Speaker 2: to your healthcare provider in such a way that they 345 00:20:58,640 --> 00:21:05,480 Speaker 2: don't see you as being hyperbolic or hysterical or attention seeking. 346 00:21:06,000 --> 00:21:08,040 Speaker 2: There's all these things that you're trying to balance when 347 00:21:08,040 --> 00:21:10,480 Speaker 2: you had these conversations with people to try to get 348 00:21:10,480 --> 00:21:12,960 Speaker 2: them to take you seriously. I think those were the 349 00:21:13,040 --> 00:21:18,640 Speaker 2: moments that maybe translated or were sensed by her healthcare 350 00:21:18,640 --> 00:21:23,760 Speaker 2: team that this cannot go on. I cannot continue like this. 351 00:21:23,880 --> 00:21:26,919 Speaker 2: I need help. I need something more than what I'm getting. 352 00:21:27,680 --> 00:21:32,560 Speaker 2: This can't be all. The thought of this world not 353 00:21:32,640 --> 00:21:35,800 Speaker 2: having her in it because of something like that is 354 00:21:36,119 --> 00:21:37,240 Speaker 2: that's just unbearable. 355 00:21:41,640 --> 00:21:45,159 Speaker 4: Doctor Gupta is all too familiar with the emotional and 356 00:21:45,200 --> 00:21:48,160 Speaker 4: social impact of unexplained chronic illness. 357 00:21:49,040 --> 00:21:55,320 Speaker 3: Oftentimes, I've also heard that relationships are altered by these symptoms. 358 00:21:55,560 --> 00:21:59,200 Speaker 3: If you haven't gone through it, you don't really understand 359 00:22:00,040 --> 00:22:04,080 Speaker 3: hence nature of the symptoms that you're loved on maybe experiencing. 360 00:22:04,400 --> 00:22:07,119 Speaker 3: They'll be in this kind of cycle of trying to 361 00:22:07,160 --> 00:22:09,240 Speaker 3: find relief and really suffering. 362 00:22:10,640 --> 00:22:13,720 Speaker 4: At this point, Kristin is living with outbreaks that last 363 00:22:13,800 --> 00:22:17,480 Speaker 4: as long as six months, her body covered in rashes 364 00:22:17,840 --> 00:22:20,959 Speaker 4: for longer periods at a time, and the relief between 365 00:22:21,000 --> 00:22:25,399 Speaker 4: flares is dwindling. Things are getting worse and worse. She 366 00:22:25,520 --> 00:22:28,720 Speaker 4: decides again to seek help from a professional, but this 367 00:22:28,800 --> 00:22:31,840 Speaker 4: time she finds a specialist who is an expert in 368 00:22:31,880 --> 00:22:36,520 Speaker 4: the field of allergy immunology, and she is absolutely determined 369 00:22:36,640 --> 00:22:37,439 Speaker 4: to get an answer. 370 00:22:40,000 --> 00:22:43,120 Speaker 1: I had had an episode for it would have been 371 00:22:43,320 --> 00:22:48,040 Speaker 1: longer than six weeks at this point, and I was 372 00:22:48,160 --> 00:22:51,439 Speaker 1: having trouble getting relief. It's hard to say it out loud. 373 00:22:52,400 --> 00:22:55,479 Speaker 1: Nothing that we would have done in the past was working. 374 00:22:55,960 --> 00:22:59,159 Speaker 1: The worst part for me personally, or the first few weeks, 375 00:22:59,640 --> 00:23:03,000 Speaker 1: that's where I find it hard to sit, to have 376 00:23:03,040 --> 00:23:06,520 Speaker 1: a conversation like this, where I don't want to shower 377 00:23:06,600 --> 00:23:09,399 Speaker 1: because of how bad it feels that my sleep is disturbed. 378 00:23:09,520 --> 00:23:11,919 Speaker 1: You are managing it just as best you can. It 379 00:23:11,960 --> 00:23:15,359 Speaker 1: will come and go. And you just are waiting for 380 00:23:15,480 --> 00:23:19,240 Speaker 1: it to get bad again. I would never go more 381 00:23:19,240 --> 00:23:22,040 Speaker 1: than twenty four hours that I can recall during that 382 00:23:22,160 --> 00:23:26,719 Speaker 1: time without having pithes. I find it really traumatizing. So 383 00:23:26,760 --> 00:23:31,160 Speaker 1: I went to a new allargist immunologist, and I felt 384 00:23:31,160 --> 00:23:34,199 Speaker 1: this need to prove to her how miserable I was. 385 00:23:34,760 --> 00:23:37,919 Speaker 1: Because it waxes in waynes Sometimes you'll show up to 386 00:23:37,920 --> 00:23:39,960 Speaker 1: the doctor and your hives won't be bad. 387 00:23:40,040 --> 00:23:41,160 Speaker 5: So I was prepared with. 388 00:23:41,160 --> 00:23:44,560 Speaker 1: Pictures and descriptors. You know, I was ready to go, 389 00:23:45,119 --> 00:23:46,879 Speaker 1: and she didn't need any of that. 390 00:23:47,480 --> 00:23:49,520 Speaker 5: She believed me. She knew what it was. 391 00:23:50,320 --> 00:23:55,239 Speaker 4: After twenty years of desperately seeking answers, you'd found a 392 00:23:55,280 --> 00:23:58,280 Speaker 4: doctor who knew what she was looking at. What did 393 00:23:58,320 --> 00:23:58,720 Speaker 4: she say? 394 00:23:58,960 --> 00:24:02,920 Speaker 5: She said how Chronic spontaneous urticaria. 395 00:24:04,640 --> 00:24:09,320 Speaker 4: Also known as CSU. Doctor Kupta, expert in the field 396 00:24:09,359 --> 00:24:12,120 Speaker 4: of allergy and immunology, explains. 397 00:24:11,920 --> 00:24:17,120 Speaker 3: Chronic spontaneous urticaria is a specific type of condition where 398 00:24:17,400 --> 00:24:20,720 Speaker 3: you've had hives for at least six weeks or longer 399 00:24:20,760 --> 00:24:23,719 Speaker 3: and they come and go without any rib or reason. 400 00:24:24,320 --> 00:24:26,280 Speaker 3: You can get them in the morning when you wake up, 401 00:24:26,320 --> 00:24:29,480 Speaker 3: in the middle of the night, during the day, anytime 402 00:24:29,480 --> 00:24:34,160 Speaker 3: of the day. Hives can also be called urticaria, and 403 00:24:34,440 --> 00:24:38,120 Speaker 3: hives are caused by a chemical called histamine that's released 404 00:24:38,160 --> 00:24:41,280 Speaker 3: in our body. And when histamine is released, it can 405 00:24:41,320 --> 00:24:44,560 Speaker 3: cause hives. And histamine can be released because of an 406 00:24:44,560 --> 00:24:48,200 Speaker 3: allergic reaction, but it can also be released outside of 407 00:24:48,240 --> 00:24:51,399 Speaker 3: an allergic reaction. That's where it gets really confusing for 408 00:24:51,520 --> 00:24:57,440 Speaker 3: people with chronic spontaneous urticaria, because those aren't hives related 409 00:24:57,480 --> 00:24:58,320 Speaker 3: to an allergy. 410 00:24:58,920 --> 00:25:03,800 Speaker 4: Do we know the root cause why some individuals have 411 00:25:04,040 --> 00:25:05,560 Speaker 4: CSU and others don't. 412 00:25:05,840 --> 00:25:09,840 Speaker 3: We're starting to see that it may be something called 413 00:25:10,400 --> 00:25:15,520 Speaker 3: an autoimmune or an autoallergic condition within their body. And 414 00:25:15,560 --> 00:25:19,040 Speaker 3: so what that means is that your body may be 415 00:25:19,160 --> 00:25:23,000 Speaker 3: reacting to chemicals that are in your body normally and 416 00:25:23,160 --> 00:25:26,800 Speaker 3: that may be causing mass cells to secrete the histamines 417 00:25:27,400 --> 00:25:28,159 Speaker 3: with CSU. 418 00:25:28,280 --> 00:25:31,640 Speaker 4: Are there triggers in terms of the flare up. 419 00:25:32,040 --> 00:25:36,040 Speaker 3: Trigger can sometimes be a confusing word because sometimes when 420 00:25:36,080 --> 00:25:39,479 Speaker 3: people think of triggers, they think that's the cause. So 421 00:25:39,720 --> 00:25:43,520 Speaker 3: it's not the cause of those mass cells being activated. 422 00:25:44,000 --> 00:25:49,280 Speaker 3: Your body would release those chemicals with or without that trigger, 423 00:25:49,760 --> 00:25:53,520 Speaker 3: but that release may be enhanced if you're also exposed 424 00:25:53,520 --> 00:25:58,440 Speaker 3: to that trigger. Triggers, maybe things like stress, maybe things 425 00:25:58,800 --> 00:26:04,440 Speaker 3: like hot or hold weather, maybe things like certain foods. 426 00:26:04,560 --> 00:26:07,960 Speaker 3: But even if we put somebody who had chronic spontaneous 427 00:26:08,080 --> 00:26:11,200 Speaker 3: or to carry out in a bubble, they would still 428 00:26:11,400 --> 00:26:16,840 Speaker 3: have hives because the body is doing something inside of 429 00:26:16,880 --> 00:26:22,600 Speaker 3: itself that's causing the mass cells to release those chemicals. 430 00:26:22,640 --> 00:26:25,880 Speaker 1: And it was so freeing for me, it really was. 431 00:26:25,960 --> 00:26:28,800 Speaker 1: It was something that had nothing to do with any 432 00:26:28,840 --> 00:26:33,359 Speaker 1: allergy at all. And I also found out at that 433 00:26:33,520 --> 00:26:37,120 Speaker 1: time that we would probably never find out what caused it. 434 00:26:37,840 --> 00:26:40,199 Speaker 1: And can I tell you what a relief that was 435 00:26:40,240 --> 00:26:40,480 Speaker 1: to me. 436 00:26:41,359 --> 00:26:42,480 Speaker 5: I know that sounds. 437 00:26:42,200 --> 00:26:45,840 Speaker 1: Counterintuitive maybe, but I could stop trying to figure out 438 00:26:45,920 --> 00:26:48,800 Speaker 1: what it was that this was. It was just something 439 00:26:48,800 --> 00:26:53,320 Speaker 1: my body was doing, being overactive in its defense of itself. 440 00:26:54,880 --> 00:26:59,240 Speaker 4: Finding a diagnosis for patients with this stabilitating condition after 441 00:26:59,480 --> 00:27:03,240 Speaker 4: years of searching for answers is something doctor Gupta doesn't 442 00:27:03,280 --> 00:27:04,160 Speaker 4: take for granted. 443 00:27:04,920 --> 00:27:06,880 Speaker 3: You know, those are the good days, those are the 444 00:27:06,920 --> 00:27:09,639 Speaker 3: great visits. Those are the visits that we wish we 445 00:27:09,640 --> 00:27:12,680 Speaker 3: could just have on repeat, because those are the moments 446 00:27:12,720 --> 00:27:17,479 Speaker 3: that every doctor wants with CSU, because the quality of 447 00:27:17,520 --> 00:27:22,240 Speaker 3: life burden is so high when a patient finally gets relief. 448 00:27:22,680 --> 00:27:25,800 Speaker 3: It is very rewarding and everyone feels so good. 449 00:27:27,040 --> 00:27:29,560 Speaker 4: Kristen's visit with her own doctor was this way. 450 00:27:30,240 --> 00:27:33,879 Speaker 1: I think that doctor really changed the way that I 451 00:27:34,000 --> 00:27:38,119 Speaker 1: view this condition entirely. It was probably less than twenty 452 00:27:38,200 --> 00:27:41,840 Speaker 1: minutes that first conversation I had with her, and she 453 00:27:42,000 --> 00:27:42,800 Speaker 1: changed my life. 454 00:27:42,880 --> 00:27:43,560 Speaker 5: She really did. 455 00:27:44,880 --> 00:27:48,280 Speaker 2: When she said this has a name, and this is 456 00:27:48,280 --> 00:27:49,600 Speaker 2: what we're going to do about it, and we have 457 00:27:49,640 --> 00:27:53,760 Speaker 2: a plan. There is so much relief, so much relief 458 00:27:53,800 --> 00:27:56,600 Speaker 2: and just having the name, because now you know what 459 00:27:56,640 --> 00:28:00,520 Speaker 2: you're dealing with, and you have a strategy, something that 460 00:28:00,600 --> 00:28:04,080 Speaker 2: you can do to improve your situation, to improve the symptoms, 461 00:28:04,119 --> 00:28:05,160 Speaker 2: to improve your. 462 00:28:05,119 --> 00:28:05,720 Speaker 4: Day to day. 463 00:28:06,280 --> 00:28:08,760 Speaker 2: And I think just the joy, the relief that I 464 00:28:08,800 --> 00:28:11,720 Speaker 2: think both of us spelt in that moment that was 465 00:28:11,800 --> 00:28:13,240 Speaker 2: pretty profound. 466 00:28:14,080 --> 00:28:16,440 Speaker 4: Were you familiar with CSU. 467 00:28:17,119 --> 00:28:19,359 Speaker 2: Most of the patients that I would work with have 468 00:28:19,520 --> 00:28:23,760 Speaker 2: other inflammatory processes going on, whether it be asthma or 469 00:28:24,119 --> 00:28:28,280 Speaker 2: COPD or something like that, so they would always be 470 00:28:28,400 --> 00:28:31,679 Speaker 2: coupled with other sorts of flare ups. But yeah, I 471 00:28:31,720 --> 00:28:34,639 Speaker 2: had been familiar with CSU for years. 472 00:28:35,240 --> 00:28:37,840 Speaker 4: Wow, So it must have been in that moment. It 473 00:28:37,920 --> 00:28:41,840 Speaker 4: must have been as if you were standing so close 474 00:28:41,880 --> 00:28:44,080 Speaker 4: to the puzzle, yes, that you couldn't see it. 475 00:28:44,200 --> 00:28:47,000 Speaker 2: That is exactly how it was. It's like sometimes you 476 00:28:47,040 --> 00:28:49,280 Speaker 2: feel like you're working the puzzle, but you don't have 477 00:28:49,320 --> 00:28:52,400 Speaker 2: the picture for the box. You're just trying to frantically 478 00:28:52,440 --> 00:28:55,120 Speaker 2: put pieces together. And that's a lot of what this 479 00:28:55,240 --> 00:28:55,680 Speaker 2: felt like. 480 00:28:57,200 --> 00:29:01,200 Speaker 4: After years on her diagnostic, Goddessy not only had found 481 00:29:01,200 --> 00:29:04,280 Speaker 4: a name for her condition, but there was also a 482 00:29:04,360 --> 00:29:09,000 Speaker 4: clear path forward. What did your doctor tell you about 483 00:29:09,000 --> 00:29:10,040 Speaker 4: possible treatments? 484 00:29:10,600 --> 00:29:14,920 Speaker 1: She said, The logical next step is to try a 485 00:29:15,000 --> 00:29:18,160 Speaker 1: biologic if you're willing, And she told me all about it, 486 00:29:18,680 --> 00:29:22,000 Speaker 1: and I would have done it in that very moment 487 00:29:22,120 --> 00:29:22,720 Speaker 1: if I could have. 488 00:29:24,400 --> 00:29:28,240 Speaker 4: For those who are not familiar, what is a biologic. 489 00:29:29,000 --> 00:29:33,280 Speaker 3: Most medications are made from chemicals. Biologic medications are made 490 00:29:33,320 --> 00:29:37,360 Speaker 3: from living organisms. It is a medication that targets a 491 00:29:37,400 --> 00:29:43,520 Speaker 3: specific part of the body internally, and it helps shut 492 00:29:43,560 --> 00:29:45,080 Speaker 3: things off or turn things on. 493 00:29:45,720 --> 00:29:49,360 Speaker 4: So it almost seems like it is as close to 494 00:29:49,600 --> 00:29:55,000 Speaker 4: a personalized, almost designer approach to a particular condition. 495 00:29:55,480 --> 00:29:58,760 Speaker 1: I think it's one hundred percent as close as it 496 00:29:58,800 --> 00:30:02,920 Speaker 1: can get in the situation to personalized medicine. I felt 497 00:30:04,240 --> 00:30:07,640 Speaker 1: that my hives were getting the attention so did they deserve. 498 00:30:08,320 --> 00:30:12,200 Speaker 3: When we first started seeing patients with CSU, we really 499 00:30:12,240 --> 00:30:15,600 Speaker 3: only had antihistamines, and it was really frustrating for us 500 00:30:15,680 --> 00:30:19,320 Speaker 3: as doctors and for patients because we weren't getting to 501 00:30:19,360 --> 00:30:24,120 Speaker 3: that point where people were getting relief. Now we actually 502 00:30:24,160 --> 00:30:29,560 Speaker 3: have three other medications that are approved for chronic spontaneous urticaria, 503 00:30:29,880 --> 00:30:32,400 Speaker 3: and if one doesn't work, then we can reach for another. 504 00:30:32,760 --> 00:30:36,760 Speaker 4: It was a game changer. Did you have any reservations 505 00:30:36,800 --> 00:30:39,360 Speaker 4: at all about trying the biologic. 506 00:30:39,400 --> 00:30:42,720 Speaker 1: I definitely was nervous because this was so new. I 507 00:30:42,720 --> 00:30:44,960 Speaker 1: think anytime that they say, you know, we'll keep you 508 00:30:45,000 --> 00:30:47,200 Speaker 1: in the office for a said amount of time after 509 00:30:47,360 --> 00:30:51,840 Speaker 1: a monitor for anaphylaxis, that's nerve wrecking, right, even though 510 00:30:51,880 --> 00:30:54,400 Speaker 1: you know how well this works in the safety profiles 511 00:30:54,400 --> 00:30:56,320 Speaker 1: of certain drugs, you know, I think that would be 512 00:30:56,360 --> 00:30:59,000 Speaker 1: nerve wrecking for anyone. But I was just filled with 513 00:30:59,040 --> 00:31:01,960 Speaker 1: such hope. I think that something might change for me. 514 00:31:03,000 --> 00:31:06,320 Speaker 2: I remember that she was getting ready to go for 515 00:31:06,400 --> 00:31:11,200 Speaker 2: her first appointment for her biologic treatment, and she was 516 00:31:11,240 --> 00:31:15,960 Speaker 2: pretty nervous about it. For many years, I had asthmatic 517 00:31:16,000 --> 00:31:19,080 Speaker 2: patients who would come into the hospital and we would 518 00:31:19,080 --> 00:31:22,880 Speaker 2: administer the biologic in the emergency room and have them 519 00:31:22,880 --> 00:31:25,200 Speaker 2: sit and wait with us for forty five minutes or 520 00:31:25,200 --> 00:31:27,080 Speaker 2: an hour. You just make sure they didn't have any 521 00:31:27,120 --> 00:31:31,560 Speaker 2: adverse reactions. And so I was very familiar with these biologics, 522 00:31:31,600 --> 00:31:33,840 Speaker 2: and I said, let me tell you what it's going 523 00:31:33,920 --> 00:31:36,280 Speaker 2: to be like. And so I was able to share 524 00:31:36,320 --> 00:31:38,800 Speaker 2: with her, you know, this is what they'll do, this 525 00:31:38,840 --> 00:31:41,080 Speaker 2: is how the treatment will be. And I think we 526 00:31:41,120 --> 00:31:43,280 Speaker 2: talked maybe that whole forty five minutes that she was 527 00:31:43,280 --> 00:31:46,440 Speaker 2: in the waiting room. Finally the time was up and 528 00:31:46,480 --> 00:31:49,200 Speaker 2: they let her go, and she said, oh, that wasn't 529 00:31:49,200 --> 00:31:49,720 Speaker 2: bad at all. 530 00:31:50,320 --> 00:31:54,520 Speaker 1: I had really hoped that the results would be, you know, 531 00:31:54,680 --> 00:31:58,920 Speaker 1: within the first month they would be much better, and 532 00:31:58,960 --> 00:32:03,680 Speaker 1: then I would expect not to see them again after that. 533 00:32:05,240 --> 00:32:09,280 Speaker 4: But the results were not immediate. In fact, when months 534 00:32:09,280 --> 00:32:13,120 Speaker 4: had passed and Kristen was still experiencing symptoms, she started 535 00:32:13,120 --> 00:32:16,440 Speaker 4: to believe that maybe this treatment was not going to work. 536 00:32:17,040 --> 00:32:20,640 Speaker 2: She was a little disappointed because it didn't seem to 537 00:32:20,680 --> 00:32:25,840 Speaker 2: be working, and really questioning whether or not it was 538 00:32:25,880 --> 00:32:29,320 Speaker 2: something that she should even continue because she wasn't getting 539 00:32:29,320 --> 00:32:33,240 Speaker 2: any benefit from it. And I remember having the conversations 540 00:32:33,280 --> 00:32:36,680 Speaker 2: with her of just stick it out. These things are 541 00:32:36,680 --> 00:32:40,200 Speaker 2: not immediate. It took you a long time to get 542 00:32:40,200 --> 00:32:43,240 Speaker 2: to this point. We need to give this biologic chance. 543 00:32:43,680 --> 00:32:46,560 Speaker 2: We need to give this medication a chance to get 544 00:32:46,560 --> 00:32:49,040 Speaker 2: in there and undo all of the things that have 545 00:32:49,160 --> 00:32:49,600 Speaker 2: been done. 546 00:32:50,600 --> 00:32:53,800 Speaker 1: I was losing hope, and I talked to a colleague 547 00:32:53,840 --> 00:32:56,880 Speaker 1: who was a pharmacist and just said, can you help 548 00:32:56,920 --> 00:32:59,920 Speaker 1: me to understand, you know, is it going to be 549 00:33:00,200 --> 00:33:04,160 Speaker 1: this way forever? And he was talking with colleagues who 550 00:33:04,280 --> 00:33:07,240 Speaker 1: said to him, you know, make sure she waits to 551 00:33:07,360 --> 00:33:09,480 Speaker 1: six months. Let's just see what happens when she gets 552 00:33:09,520 --> 00:33:11,800 Speaker 1: to six months. And I thought, okay, I can do that. 553 00:33:11,920 --> 00:33:14,920 Speaker 1: Let's see what happens when we get to six months. 554 00:33:14,960 --> 00:33:19,240 Speaker 4: And then early in twenty nineteen, twenty years after the 555 00:33:19,280 --> 00:33:23,360 Speaker 4: first rash and six months after the biologic was administered, 556 00:33:24,000 --> 00:33:24,760 Speaker 4: what happens. 557 00:33:25,360 --> 00:33:29,600 Speaker 1: In my mind, it is almost as if a switch 558 00:33:29,640 --> 00:33:33,200 Speaker 1: flipped at six months, almost exactly as they had said 559 00:33:33,320 --> 00:33:38,880 Speaker 1: to me, and my hives were gone, absolutely gone. 560 00:33:39,800 --> 00:33:43,920 Speaker 4: Even now looking back on this, I can I can 561 00:33:43,960 --> 00:33:44,880 Speaker 4: feel your joy. 562 00:33:45,240 --> 00:33:47,080 Speaker 5: I'm grinning like a goofball. 563 00:33:47,480 --> 00:33:48,640 Speaker 4: How many years has it been? 564 00:33:49,080 --> 00:33:51,880 Speaker 1: I think it has been I think it has been 565 00:33:52,080 --> 00:33:55,880 Speaker 1: seven years. Wow, can you believe that I actually didn't 566 00:33:55,920 --> 00:33:58,200 Speaker 1: start to say that I was in remission until this year, 567 00:33:58,440 --> 00:34:01,960 Speaker 1: Believe it or not. I still keep a drawer full 568 00:34:02,000 --> 00:34:05,240 Speaker 1: of Anahis tom Is just in case, and every once 569 00:34:05,240 --> 00:34:07,080 Speaker 1: in a while I will have a hive and I 570 00:34:07,120 --> 00:34:08,000 Speaker 1: do not panic. 571 00:34:09,200 --> 00:34:12,360 Speaker 4: How have you seen life change for Kristen? Since she 572 00:34:12,560 --> 00:34:15,600 Speaker 4: has gotten relief through effective treatment, she. 573 00:34:15,719 --> 00:34:21,239 Speaker 2: Is finally comfortable in her own skin. She's not constantly 574 00:34:21,280 --> 00:34:23,960 Speaker 2: thinking about, oh what if I had this flare up? 575 00:34:24,080 --> 00:34:25,480 Speaker 2: Or I'm in the middle of this flare up? How 576 00:34:25,480 --> 00:34:27,960 Speaker 2: can I possibly do all the things that I need 577 00:34:28,000 --> 00:34:32,520 Speaker 2: to do? She can really just have a normal existence now, 578 00:34:32,680 --> 00:34:36,239 Speaker 2: a normal life without the worry of always having that 579 00:34:36,360 --> 00:34:37,400 Speaker 2: hanging over her head. 580 00:34:37,719 --> 00:34:40,640 Speaker 1: One of the best things in life is being in 581 00:34:40,640 --> 00:34:44,040 Speaker 1: a hot shower or being in a hot tub, a 582 00:34:44,160 --> 00:34:46,000 Speaker 1: warm pool, or the warm ocean. 583 00:34:46,719 --> 00:34:51,240 Speaker 5: And that was absolutely intolerable. 584 00:34:52,080 --> 00:34:54,919 Speaker 1: And what a gift it is that I can have 585 00:34:55,360 --> 00:34:57,720 Speaker 1: water touch my skin without misery. 586 00:34:58,520 --> 00:35:02,040 Speaker 4: Wow, that just made me emotional. 587 00:35:02,160 --> 00:35:02,359 Speaker 1: You know. 588 00:35:02,400 --> 00:35:05,880 Speaker 4: It's if you a door opened and you were allowed 589 00:35:05,920 --> 00:35:08,160 Speaker 4: to step back into living life fully. 590 00:35:08,840 --> 00:35:11,680 Speaker 5: Yes, that's exactly right. That's exactly what it feels like. 591 00:35:13,040 --> 00:35:16,880 Speaker 4: This is the perfect place to pivot into your advocacy work. 592 00:35:17,280 --> 00:35:22,960 Speaker 4: Why is advocacy such a big part of your life today? 593 00:35:23,640 --> 00:35:27,440 Speaker 1: I started an advocacy work because my father died of COPD. 594 00:35:28,320 --> 00:35:33,440 Speaker 4: COPD stands for chronic obstructive pulmonary disease. It refers to 595 00:35:33,480 --> 00:35:35,880 Speaker 4: a group of lung diseases that caused damage to the 596 00:35:35,960 --> 00:35:37,040 Speaker 4: lungs over time. 597 00:35:37,680 --> 00:35:39,680 Speaker 1: He was sixty five years old, he had only been 598 00:35:39,719 --> 00:35:42,400 Speaker 1: retired two years, and his mother died at fifty seven 599 00:35:42,640 --> 00:35:46,080 Speaker 1: of COPD as well. And I didn't even know that 600 00:35:46,080 --> 00:35:50,120 Speaker 1: patient advocacy organizations existed until I found the COPD Foundation, 601 00:35:51,320 --> 00:35:56,200 Speaker 1: And once there, I realized that there were all of 602 00:35:56,239 --> 00:36:01,759 Speaker 1: these caring, bright motivated, passionate individuals working to improve the 603 00:36:01,800 --> 00:36:04,680 Speaker 1: lives of people impacted by chronic disease every day. 604 00:36:06,000 --> 00:36:09,279 Speaker 4: Kristin left the COPD Foundation in twenty twenty three to 605 00:36:09,320 --> 00:36:12,080 Speaker 4: take a job as the vice president of Education for 606 00:36:12,160 --> 00:36:16,320 Speaker 4: the Global Allergy and Airways Patient Platform. She is also 607 00:36:16,440 --> 00:36:20,640 Speaker 4: the executive director of We See You, a nonprofit dedicated 608 00:36:20,680 --> 00:36:24,080 Speaker 4: to empowering and improving the lives of those affected by 609 00:36:24,160 --> 00:36:27,120 Speaker 4: chronic urticaria. 610 00:36:27,160 --> 00:36:30,279 Speaker 1: It's amazing the world that opens up to you when 611 00:36:30,320 --> 00:36:33,359 Speaker 1: you start listening to patients and their families, whether they 612 00:36:33,400 --> 00:36:35,880 Speaker 1: live next door to you or whether they live on 613 00:36:35,920 --> 00:36:39,960 Speaker 1: the other side of the globe. It is amazing what 614 00:36:40,000 --> 00:36:42,480 Speaker 1: we can do for each other, how we can empower 615 00:36:42,520 --> 00:36:46,759 Speaker 1: each other, educate each other. It's amazing how we can 616 00:36:46,960 --> 00:36:52,799 Speaker 1: help to push others to better advocate for better care 617 00:36:52,880 --> 00:36:57,560 Speaker 1: for themselves, or for physicians and other healthcare professionals to 618 00:36:57,600 --> 00:36:59,640 Speaker 1: listen to them in a way they haven't before, to 619 00:36:59,680 --> 00:37:01,880 Speaker 1: work with them in a way that they haven't before, 620 00:37:02,760 --> 00:37:06,200 Speaker 1: or to even speak to lawmakers that they thought they 621 00:37:06,200 --> 00:37:09,640 Speaker 1: would never meet in their lives. The power of patient 622 00:37:09,680 --> 00:37:13,839 Speaker 1: advocacy is I feel limitless, and so I consider it 623 00:37:13,880 --> 00:37:15,719 Speaker 1: an honor for us to be able to do this 624 00:37:15,840 --> 00:37:16,440 Speaker 1: every day. 625 00:37:17,040 --> 00:37:20,759 Speaker 5: I'm very lucky that this is what my journey has been. 626 00:37:21,760 --> 00:37:24,640 Speaker 2: We work so closely with patients who are living with 627 00:37:24,719 --> 00:37:29,320 Speaker 2: chronic illnesses. It changed our perspectives, hers in particular, because 628 00:37:29,360 --> 00:37:32,400 Speaker 2: she can say, I understand exactly what you're talking about. 629 00:37:32,920 --> 00:37:36,200 Speaker 2: I know what it's like to live with a chronic illness. 630 00:37:36,520 --> 00:37:39,239 Speaker 2: But you don't have to be a victim of it. 631 00:37:39,840 --> 00:37:44,400 Speaker 2: You can find your power and you can change this outcome, 632 00:37:45,040 --> 00:37:47,399 Speaker 2: and I think that is really powerful for her. 633 00:37:48,080 --> 00:37:50,880 Speaker 3: I think the most important thing that a provider needs 634 00:37:50,960 --> 00:37:55,239 Speaker 3: to do is acknowledge those feelings, right, and acknowledge that 635 00:37:55,880 --> 00:37:59,440 Speaker 3: the condition that they have, that they are dealing with 636 00:38:00,080 --> 00:38:04,680 Speaker 3: a condition that's difficult, right. And so again, sometimes even patients, 637 00:38:04,719 --> 00:38:07,359 Speaker 3: because it's not a life threatening condition, they get kind 638 00:38:07,400 --> 00:38:10,839 Speaker 3: of confused and they feel like, am I overreacting? No, 639 00:38:10,960 --> 00:38:14,080 Speaker 3: You're not overreacting. This is a big deal. You're not 640 00:38:14,239 --> 00:38:17,759 Speaker 3: able to sleep, you're not able to function, you are 641 00:38:18,120 --> 00:38:23,440 Speaker 3: feeling uncomfortable in your body, and you're also feeling self conscious. 642 00:38:23,560 --> 00:38:26,080 Speaker 3: We are here in partnership and we're going to figure 643 00:38:26,120 --> 00:38:28,160 Speaker 3: out which medication is going to work. 644 00:38:28,200 --> 00:38:30,000 Speaker 4: And is there a new type of medication on the 645 00:38:30,000 --> 00:38:31,760 Speaker 4: block when it comes to treating CSU. 646 00:38:32,960 --> 00:38:36,880 Speaker 3: Just recently, we have another new option which is called 647 00:38:36,920 --> 00:38:40,360 Speaker 3: a BTK inhibitor, and this is what we call a 648 00:38:40,400 --> 00:38:44,560 Speaker 3: small molecule medication. And one of the things that we 649 00:38:44,680 --> 00:38:47,399 Speaker 3: have seen with the BTK inhibitor is that it may 650 00:38:47,800 --> 00:38:52,760 Speaker 3: work more quickly than biologics. All of these medications target 651 00:38:52,880 --> 00:38:58,840 Speaker 3: different parts of the immune system and block that histamine 652 00:38:58,960 --> 00:39:03,000 Speaker 3: ultimately from getting released. For me, more is better, I 653 00:39:03,080 --> 00:39:05,800 Speaker 3: can't wait for more research to be done in this condition, 654 00:39:05,840 --> 00:39:09,719 Speaker 3: in all conditions, so that we can really have options 655 00:39:09,760 --> 00:39:13,440 Speaker 3: when one medication may not work for a patient, because 656 00:39:13,560 --> 00:39:16,040 Speaker 3: at the end of the day, every human body is 657 00:39:16,040 --> 00:39:19,359 Speaker 3: different and some people may respond to one medication and 658 00:39:19,400 --> 00:39:22,959 Speaker 3: some people may respond to another medication. That we are 659 00:39:23,040 --> 00:39:26,200 Speaker 3: in this field to help people feel better, and that's 660 00:39:26,239 --> 00:39:31,040 Speaker 3: our ultimate goal at all times. 661 00:39:33,880 --> 00:39:38,600 Speaker 4: Kristen, what do you hope that people take away from 662 00:39:39,080 --> 00:39:40,960 Speaker 4: your story? 663 00:39:41,040 --> 00:39:43,360 Speaker 1: You didn't even know you said it, but hope is 664 00:39:43,400 --> 00:39:47,520 Speaker 1: what I hope they take away. I think that when 665 00:39:47,600 --> 00:39:50,440 Speaker 1: we are in our darkest moments with a chronic condition, 666 00:39:51,280 --> 00:39:54,320 Speaker 1: we often don't think that there's anyone out there working 667 00:39:54,400 --> 00:39:56,960 Speaker 1: for us. We don't think that there are people who 668 00:39:57,040 --> 00:40:01,600 Speaker 1: understand us, or other people who are going through what 669 00:40:01,640 --> 00:40:05,680 Speaker 1: we've gone through, or healthcare professionals who can help us. 670 00:40:06,440 --> 00:40:12,759 Speaker 2: Even if it feels like the condition is unbeatable, even 671 00:40:12,840 --> 00:40:15,279 Speaker 2: if you feel like in the moment, oh, this is 672 00:40:15,320 --> 00:40:20,000 Speaker 2: not getting any better, I'm tired. Even when it feels insurmountable, 673 00:40:20,480 --> 00:40:23,399 Speaker 2: know that it isn't know that there are people out 674 00:40:23,440 --> 00:40:27,120 Speaker 2: there all day, every day who have dedicated their lives 675 00:40:27,880 --> 00:40:31,839 Speaker 2: to finding answers for you and people like you. They're 676 00:40:31,840 --> 00:40:34,560 Speaker 2: doing the research, they're doing the clinical trials, They're out 677 00:40:34,560 --> 00:40:40,200 Speaker 2: there trying to find answers to support you. So keep looking, 678 00:40:40,360 --> 00:40:45,160 Speaker 2: keep searching. Find the right healthcare team that will not 679 00:40:45,200 --> 00:40:48,040 Speaker 2: take no for an answer and will keep looking to 680 00:40:48,040 --> 00:40:49,279 Speaker 2: find the right answers for you. 681 00:40:50,239 --> 00:40:53,360 Speaker 1: No one knows you better than you know yourself, but 682 00:40:53,440 --> 00:40:57,960 Speaker 1: a close second is somebody who experiences what you experience 683 00:40:58,040 --> 00:41:03,719 Speaker 1: when it comes to a chronic disease. I think that communication, 684 00:41:03,960 --> 00:41:09,600 Speaker 1: that community, that support, that peer to peer advocacy is irreplaceable. 685 00:41:09,960 --> 00:41:12,680 Speaker 1: You do not have to suffer in silence alone or 686 00:41:12,760 --> 00:41:15,560 Speaker 1: think this is something that you just have to adapt 687 00:41:15,600 --> 00:41:17,919 Speaker 1: to for the rest of your life, because your life 688 00:41:17,920 --> 00:41:19,319 Speaker 1: does not have to be like this. 689 00:41:20,120 --> 00:41:23,480 Speaker 5: There is hope. There is hope. 690 00:41:23,760 --> 00:41:28,160 Speaker 1: I'm Kristin Willard and it took me until my forties 691 00:41:28,640 --> 00:41:33,160 Speaker 1: to figure out that I had chronic spontaneous urticaria and 692 00:41:33,280 --> 00:41:36,359 Speaker 1: I am now a patient intermission and could not be 693 00:41:36,680 --> 00:41:37,600 Speaker 1: happier to say that. 694 00:41:39,400 --> 00:41:43,359 Speaker 4: You can learn more about we see you at Chronicdherdicaria 695 00:41:43,440 --> 00:41:46,400 Speaker 4: dot org and you can find the Global Allergy and 696 00:41:46,440 --> 00:41:53,000 Speaker 4: Airways Patient Platform at gaapp dot org. Coming up on 697 00:41:53,160 --> 00:41:57,759 Speaker 4: next week's episode of Symptomatic, Michelle Shapiro had built a 698 00:41:57,800 --> 00:42:01,560 Speaker 4: career helping others get healthy when she was hit with 699 00:42:01,640 --> 00:42:03,360 Speaker 4: a debilitating health crisis. 700 00:42:03,480 --> 00:42:04,960 Speaker 6: If I had to go to the bathroom, I had 701 00:42:05,000 --> 00:42:07,000 Speaker 6: to literally lift myself up on my arms onto my 702 00:42:07,000 --> 00:42:10,399 Speaker 6: computer chair, put myself on the floor crawl because if 703 00:42:10,400 --> 00:42:12,839 Speaker 6: I put my feet on the ground, my heart rate 704 00:42:12,880 --> 00:42:16,600 Speaker 6: fluctuations were so severe that I would then be an 705 00:42:16,640 --> 00:42:17,560 Speaker 6: episode for days. 706 00:42:17,920 --> 00:42:21,400 Speaker 4: Doctors were unable to identify the cause of her symptoms, 707 00:42:21,800 --> 00:42:26,000 Speaker 4: no matter how hard Michelle pushed for answers. So unwell 708 00:42:26,040 --> 00:42:28,880 Speaker 4: that she could barely function, Michelle made it her mission 709 00:42:28,920 --> 00:42:31,200 Speaker 4: to get to the bottom of what was going on, 710 00:42:31,200 --> 00:42:34,560 Speaker 4: only to find that the condition she was experiencing is 711 00:42:34,719 --> 00:42:40,160 Speaker 4: still being understood by the medical community. As always, we 712 00:42:40,200 --> 00:42:42,720 Speaker 4: would love to hear from you. Send us your thoughts 713 00:42:42,719 --> 00:42:45,399 Speaker 4: on this episode, or share a medical mystery of your 714 00:42:45,440 --> 00:42:50,120 Speaker 4: own at Symptomatic at iHeartMedia dot com, and please rate 715 00:42:50,120 --> 00:42:54,520 Speaker 4: and review Symptomatic wherever you get your podcasts. We'll see 716 00:42:54,520 --> 00:42:59,200 Speaker 4: you next time then till then be well. Symptomatic a 717 00:42:59,280 --> 00:43:03,480 Speaker 4: medical mystery podcast, is a production of iHeartMedia's Ruby Studio. 718 00:43:04,280 --> 00:43:07,440 Speaker 4: Our show is hosted by me Lauren bry Pacheco. Our 719 00:43:07,520 --> 00:43:11,880 Speaker 4: executive producers are James Foster, Matt Ramano, and myself. Our 720 00:43:11,920 --> 00:43:18,000 Speaker 4: supervising producers are Ryan Ovadia, Haley Aliah Erickson, and Daniel Ainsworth. 721 00:43:18,600 --> 00:43:22,960 Speaker 4: This episode was written by Haley Aliah Erickson and edited 722 00:43:23,160 --> 00:43:24,719 Speaker 4: by Samuel Richardson.