WEBVTT - Case #31: Kristen 0:00:03.360 --> 0:00:09.320 Rube. It feels to me as if someone has removed 0:00:09.360 --> 0:00:13.280 all my skin down to like the muscle and then 0:00:13.440 --> 0:00:17.800 covered me in a bull blanket, like a mowhare blanket. 0:00:19.440 --> 0:00:22.840 The thought of this world not having her in it, 0:00:23.480 --> 0:00:24.599 that's just unbearable. 0:00:26.239 --> 0:00:29.000 There'll be in this kind of cycle of trying to 0:00:29.040 --> 0:00:32.320 find relief and really suffering and ending up in the 0:00:32.360 --> 0:00:34.440 emergency room or urgent care. 0:00:35.640 --> 0:00:39.000 And you're always looking over your shoulder, when is this 0:00:39.120 --> 0:00:40.000 going to happen again? 0:00:41.720 --> 0:00:45.480 How terrifying would it be to fight an unknown enemy, 0:00:46.000 --> 0:00:50.080 one you didn't recognize and didn't see coming. What if 0:00:50.120 --> 0:00:53.640 that enemy was coming from within a disease that even 0:00:53.800 --> 0:00:59.320 doctors couldn't identify. Nearly half of Americans suffer from some 0:00:59.520 --> 0:01:05.200 chronic and many struggle for an accurate diagnosis. These are 0:01:05.240 --> 0:01:10.080 their stories. I'm Lauren brag Pacheco, and this is symptomatic. 0:01:17.400 --> 0:01:18.800 My name is Kristin Willard. 0:01:19.080 --> 0:01:23.000 I am the executive director at We See You, which 0:01:23.120 --> 0:01:27.440 is a US nonprofit, and I also oversee education for 0:01:27.640 --> 0:01:32.360 an organization called GAP, the Global Allergy and Airways Patient Platform. 0:01:32.440 --> 0:01:36.640 An excellent listener, full of curiosity about others. Kristin is 0:01:36.840 --> 0:01:39.959 one of those people who immediately feels like an old friend. 0:01:40.440 --> 0:01:43.520 She loves dogs, has a thirst for knowledge, and is 0:01:43.640 --> 0:01:48.840 driven by a desire to help others. Kristin where are 0:01:48.880 --> 0:01:50.120 you originally from? 0:01:50.760 --> 0:01:54.720 I grew up in northern New Jersey, which I think 0:01:54.840 --> 0:01:57.360 is one of the most wonderful places on the planet 0:01:57.440 --> 0:01:58.120 to grow up. 0:01:58.320 --> 0:01:59.920 Despite what you might hear from me. 0:02:01.200 --> 0:02:03.080 You know, we had the butt of many jokes, but 0:02:03.160 --> 0:02:05.600 I really think it was an absolutely delightful place to 0:02:05.640 --> 0:02:09.359 grow up. Where in Northern New Jersey in Morris County, 0:02:09.480 --> 0:02:12.160 I grew up in Whippany. When I was growing up, 0:02:12.200 --> 0:02:14.919 I had the luxury to move to Europe a few 0:02:14.919 --> 0:02:18.040 times with my family because of my father's job. I 0:02:18.080 --> 0:02:22.320 spent my first and second grade years in England and 0:02:22.400 --> 0:02:27.520 sixth grade in Paris and in Belgium, and that was 0:02:27.960 --> 0:02:30.239 I think one of the things that got me interested 0:02:30.520 --> 0:02:37.359 in working globally and in helping people sort of outside myself, 0:02:37.480 --> 0:02:38.760 an outside of my backyard. 0:02:39.800 --> 0:02:43.640 I hear you're a woman of many hobbies. I'm a 0:02:43.680 --> 0:02:47.080 bit of a true crime enthusiast. I think that my 0:02:47.120 --> 0:02:49.760 friends would probably say that's the understatement of the year. 0:02:49.880 --> 0:02:51.960 To be honest, it is the rabbit hole I go 0:02:52.120 --> 0:02:54.720 down when I should be sleeping because I have an 0:02:54.720 --> 0:02:59.040 eight am meeting. What draws you to true crime? 0:02:59.600 --> 0:03:04.320 My formal training is actually in clinical psychology, and I 0:03:04.480 --> 0:03:08.480 had entered my graduate program wanting to be a forensic psychologist. 0:03:08.520 --> 0:03:10.919 But I also think it's because of my interest in 0:03:10.960 --> 0:03:13.400 other humans and understanding how they tick. 0:03:14.720 --> 0:03:18.160 So how did you make the leap from forensic psychology 0:03:18.240 --> 0:03:20.120 to working in patient advocacy? 0:03:20.919 --> 0:03:21.840 In my twenties. 0:03:21.919 --> 0:03:25.480 I was working as a research assistant at Georgetown University 0:03:26.080 --> 0:03:28.800 for three years before I went to graduate school in Florida, 0:03:29.280 --> 0:03:33.080 and in graduate school, I was actually working in epilepsy research. 0:03:33.160 --> 0:03:35.480 So health has always been my interest. 0:03:36.560 --> 0:03:42.240 Looking back at your childhood, were there any indications of 0:03:42.680 --> 0:03:46.080 what kind of health issues you would encounter in your twenties? 0:03:46.720 --> 0:03:50.800 No, no precursors. The first symptoms were in my twenties. 0:03:51.440 --> 0:03:54.800 I can say truthfully that I had no inkling of 0:03:54.840 --> 0:03:55.840 what was to come. 0:03:58.960 --> 0:04:01.600 All right, let's dive into that a little bit. You're 0:04:01.800 --> 0:04:04.040 at that point living in Arlington. 0:04:04.080 --> 0:04:06.600 That's correct. This is in the early nineties. 0:04:06.680 --> 0:04:09.520 I was living just outside of DC and working my 0:04:09.640 --> 0:04:11.720 first job ever, which was very exciting. 0:04:11.760 --> 0:04:12.360 In the city. 0:04:12.640 --> 0:04:15.760 I went to a local laundromat, and I was in 0:04:15.760 --> 0:04:20.040 my twenties, so I was not particular about what kind 0:04:20.120 --> 0:04:23.039 of products I used, or detergents or anything along all 0:04:23.040 --> 0:04:26.640 those lines. In those days, whatever was the least expensive. 0:04:27.800 --> 0:04:29.640 I washed my clothes. 0:04:29.320 --> 0:04:32.599 At the laundromat, came home, and the next day. 0:04:32.480 --> 0:04:37.279 I woke up with a rash, a bright red, itchy 0:04:37.480 --> 0:04:41.080 rash in the exact shape of my bra and underwear. 0:04:42.279 --> 0:04:44.760 I called my mom, can you tell me what this is? 0:04:44.920 --> 0:04:47.360 You know? What she'd said to me was it was easy, 0:04:48.440 --> 0:04:49.520 was too strong for you? 0:04:50.720 --> 0:04:54.239 So I went into urgent care and they quickly gave 0:04:54.320 --> 0:04:57.239 me steroids and told me to use anahistamines. 0:04:58.120 --> 0:05:01.480 You said that it was in the exact location of 0:05:01.520 --> 0:05:06.320 your undergarments, but was the skin warm to the touch? 0:05:07.000 --> 0:05:08.520 It does feel warm to the touch. 0:05:08.880 --> 0:05:12.080 I think the most striking characteristic, though, is the itch. 0:05:12.720 --> 0:05:17.840 The itch is incessant. It isn't something like a sunburn 0:05:17.920 --> 0:05:20.440 where you can feel it and you can see it, 0:05:21.160 --> 0:05:25.440 but that it is tolerable if you're not moving. It 0:05:25.560 --> 0:05:27.560 sort of consumes all of you because the itch is 0:05:27.600 --> 0:05:28.279 so strong. 0:05:29.880 --> 0:05:36.440 So since that was your first outbreak or episode, did 0:05:36.480 --> 0:05:39.200 they look at it and just to attribute it directly 0:05:39.400 --> 0:05:40.680 to the detergent. 0:05:41.160 --> 0:05:45.360 Yes, I think so, especially because the evidence was so specific, 0:05:45.520 --> 0:05:48.680 because it was in the shape of my undergarments. They 0:05:48.680 --> 0:05:50.920 thought they were on the right track. Let's make sure 0:05:50.960 --> 0:05:53.640 the symptoms go away. And they did, and they go 0:05:53.680 --> 0:05:57.000 away for quite a long time actually, before they pop 0:05:57.120 --> 0:05:57.479 up again. 0:05:58.400 --> 0:06:00.840 I thought I was home free. 0:06:01.920 --> 0:06:05.320 Thinking that this strange rash was just a one time 0:06:05.400 --> 0:06:09.400 fluke an allergic reaction. Kristin makes a note to avoid 0:06:09.560 --> 0:06:12.960 that specific detergent, and she goes on with her life. 0:06:13.440 --> 0:06:16.200 Her career blossoms as she finds her purpose working in 0:06:16.279 --> 0:06:20.160 patient advocacy alongside the person that would quickly become her 0:06:20.200 --> 0:06:25.200 best friend, Stephanie. How long have you known Kristin? Tell 0:06:25.240 --> 0:06:27.320 me when and where you first met. 0:06:27.680 --> 0:06:31.600 We met at our past job. We both started at 0:06:31.600 --> 0:06:35.040 this new job about a week apart, and so we've 0:06:35.040 --> 0:06:37.719 known each other for about ten years. And you know, 0:06:37.760 --> 0:06:39.560 I think sometimes your work friends are some of your 0:06:39.600 --> 0:06:42.159 closest friends, and I think that's maybe true for us. 0:06:42.880 --> 0:06:46.960 So what were your first impressions of Kristin? 0:06:47.760 --> 0:06:51.919 She is really such a joy to be around. I 0:06:51.960 --> 0:06:55.080 mean just as a person. As a coworker, she's fantastic. 0:06:55.320 --> 0:06:59.760 She is dedicated and she is determined. If you need anything, 0:06:59.800 --> 0:07:04.760 she there. I describe her as sunshine. She really is 0:07:05.000 --> 0:07:08.920 just one of the most beautiful people I've ever met. 0:07:09.320 --> 0:07:12.160 So, outside of your work, what are some things that 0:07:12.200 --> 0:07:13.240 you too have in common? 0:07:13.600 --> 0:07:19.320 We love animals, we love true crime, we're foodies, we're vegetarians. 0:07:19.440 --> 0:07:21.200 We joke that we share a brain. 0:07:21.960 --> 0:07:25.960 And you found your way to patient advocacy because your 0:07:26.000 --> 0:07:27.200 background is in healthcare. 0:07:27.520 --> 0:07:33.200 Yeah, so I have been in healthcare for around twenty 0:07:33.280 --> 0:07:36.000 ish years. I started out as a nursing student, and 0:07:36.040 --> 0:07:38.200 then I switched over and became a respiratory therapist and 0:07:38.240 --> 0:07:39.440 I've loved it ever since. 0:07:42.880 --> 0:07:47.320 Nearly a decade after the laundry detergent incident, Kristin has 0:07:47.400 --> 0:07:52.440 hit out of nowhere with another mysterious rash. When was 0:07:52.520 --> 0:07:53.440 the next incident? 0:07:54.200 --> 0:07:57.880 The next instance was in my thirties, and this rash 0:07:57.920 --> 0:08:01.680 made itself seen everywhere. It was known by anybody who 0:08:01.720 --> 0:08:05.760 would see me, and the rash would migrate all over 0:08:05.840 --> 0:08:06.480 my body. 0:08:07.080 --> 0:08:10.880 So this time the rash hasn't stuck to one location. 0:08:10.920 --> 0:08:11.680 That's correct. 0:08:11.760 --> 0:08:15.400 So sometimes it was on my face, then in two 0:08:15.440 --> 0:08:17.400 hours on both of my legs. 0:08:17.440 --> 0:08:18.800 The entirety of my legs. 0:08:19.200 --> 0:08:25.880 Sometimes it's accompanied by swelling that is so significant that 0:08:25.960 --> 0:08:29.360 it causes pain. It almost makes your hands and your 0:08:29.400 --> 0:08:34.319 feet feel like sausages, like you're shoved so tightly into 0:08:34.320 --> 0:08:36.400 this casing that you might burst. 0:08:37.200 --> 0:08:39.079 So it was very different. 0:08:39.480 --> 0:08:43.520 From this point on. This inexplicable rash comes back regularly, 0:08:44.080 --> 0:08:48.040 and it lingers for days or even weeks at a time. 0:08:48.360 --> 0:08:50.160 It's impact unbearable. 0:08:50.840 --> 0:08:54.400 When I have one of these episodes, my skin is 0:08:54.800 --> 0:09:03.960 covered in inflamed, well just very red. Your skin looks angry, 0:09:04.240 --> 0:09:08.200 very red, sometimes almost purple, and much of the time 0:09:08.640 --> 0:09:12.040 the skin is actually raised up. It feels to me 0:09:12.200 --> 0:09:15.560 as if someone has removed all my skin truly, I 0:09:15.600 --> 0:09:19.080 mean all my skin down to like the muscle, and 0:09:19.120 --> 0:09:23.760 then covered me in a wool blanket, like a mowhair blanket. 0:09:25.240 --> 0:09:29.600 And when you can imagine that, right, it makes more 0:09:29.720 --> 0:09:32.800 sense as to why you can't cook for yourself, you 0:09:32.840 --> 0:09:36.560 can't drive yourself, you can't you know, going to a 0:09:36.600 --> 0:09:39.040 party would be out of the question because I couldn't 0:09:39.040 --> 0:09:41.760 even get off the couch. I couldn't even get showered. 0:09:43.040 --> 0:09:46.720 Kristin is desperate not to let these debilitating flares derail 0:09:46.800 --> 0:09:50.880 her entire life, but they continue to pop up unexpectedly 0:09:51.240 --> 0:09:55.840 in impossible moments. Stephanie recalls the first time she witnessed 0:09:55.840 --> 0:09:57.480 to set an outbreak in person. 0:09:58.400 --> 0:10:01.560 The first time I saw her with some of the 0:10:01.559 --> 0:10:04.960 inflammation in place. We were actually on a work trip 0:10:05.440 --> 0:10:10.000 in Chicago, and it was bitterly cold, and we had 0:10:10.080 --> 0:10:13.040 checked into the hotel. And the next morning she knocked 0:10:13.080 --> 0:10:16.560 on my door and I opened the door, and there 0:10:16.600 --> 0:10:21.760 she stood with her eyes almost swollen shut. It was 0:10:22.040 --> 0:10:25.920 just the most painful thing that I had ever seen. 0:10:26.320 --> 0:10:28.920 Kristen Treizer. Best to find some sort of pattern that 0:10:29.040 --> 0:10:32.440 is leading to the outbreaks. What are you told is 0:10:32.559 --> 0:10:33.200 triggering it? 0:10:33.960 --> 0:10:36.760 I tried to find out, Lauren. I thought, oh, they 0:10:36.840 --> 0:10:40.000 must be from food. There must be something in my environment. 0:10:40.240 --> 0:10:42.600 Maybe it's someone's pet with whom I interact. 0:10:42.640 --> 0:10:43.120 Who knows. 0:10:43.880 --> 0:10:48.960 I saw an allergist and we looked for everything. I 0:10:49.000 --> 0:10:52.720 had exhaust of allergy testing, I had blood work. I 0:10:52.920 --> 0:10:55.920 would track the things I ate. I tracked things I 0:10:55.960 --> 0:11:00.200 was exposed to. I used detergents that were free and clear. 0:11:00.440 --> 0:11:04.400 I stayed away from perfumes, all of these types of things. 0:11:04.440 --> 0:11:06.720 There was a time in my thirties where I was 0:11:06.760 --> 0:11:08.920 convinced that it was old Bay seasoning. 0:11:09.600 --> 0:11:13.600 Can you just talk to me about what testing you 0:11:13.640 --> 0:11:15.560 went through and what the results were. 0:11:16.280 --> 0:11:19.160 I had what I consider a very traditional test where 0:11:19.640 --> 0:11:23.680 they do pinpricks on your skin, so they mapped out 0:11:23.760 --> 0:11:28.080 my back and did quite an extensive panel I would 0:11:28.120 --> 0:11:32.800 guess at least thirty, maybe thirty or forty different tests, 0:11:32.840 --> 0:11:38.240 and it came back absolutely negative for everything, everything. 0:11:38.280 --> 0:11:40.040 And I was really shocked. 0:11:40.679 --> 0:11:42.839 I still thought it was an allergy, but I just 0:11:42.920 --> 0:11:45.360 thought we hadn't found out what that allergy was yet. 0:11:46.040 --> 0:11:49.680 In a desperate attempt to help her friend Stephanie joins 0:11:49.720 --> 0:11:54.160 the hunt for clues. Both of you guys are true crime, Yes, 0:11:54.400 --> 0:11:58.960 armchair detectives of sorts. Did you guys apply that skill 0:11:59.600 --> 0:12:02.960 to try to figure out what was causing these outbreaks? 0:12:03.200 --> 0:12:06.040 We absolutely did. I mean we were trying to apply 0:12:06.240 --> 0:12:09.880 all of the different learnings through all the years and 0:12:10.000 --> 0:12:13.600 come up with answers, but none of the things that 0:12:13.640 --> 0:12:16.080 we would come up with would actually be helpful. 0:12:16.520 --> 0:12:20.280 Kristen feels if she can just isolate the trigger, if 0:12:20.280 --> 0:12:22.320 she can just get to the bottom of what is 0:12:22.400 --> 0:12:25.560 causing the flare ups, she can defend herself from attack, 0:12:26.120 --> 0:12:29.040 but try as she might, the rash returns. 0:12:30.040 --> 0:12:32.680 I don't know what this is, what's causing it, but 0:12:32.720 --> 0:12:35.520 I'm sure I was exposing myself to an allergen. I 0:12:35.640 --> 0:12:37.640 was sure that was it, and particularly because of what 0:12:37.679 --> 0:12:40.200 happened in my twenties, that was really obvious as to 0:12:40.240 --> 0:12:41.120 what had caused it. 0:12:41.720 --> 0:12:43.760 And I was furious. 0:12:43.280 --> 0:12:45.160 Because I'm so methodical that I was, like, I have 0:12:45.240 --> 0:12:48.200 eliminated that detergent and I make sure I don't even 0:12:48.240 --> 0:12:50.840 touch it when I go to friends' houses. So how 0:12:51.200 --> 0:12:56.760 what else is there? Like everything becomes a potential demon right. 0:12:57.200 --> 0:13:01.120 When you're desperate for an answer her as to what's 0:13:01.440 --> 0:13:05.120 bringing something on that it's very difficult to keep your 0:13:05.120 --> 0:13:09.960 mind from jumping at conclusions as to anything. 0:13:10.360 --> 0:13:13.200 And I think you want so badly to figure it 0:13:13.280 --> 0:13:16.680 out so that you can stop it from happening again 0:13:16.720 --> 0:13:17.320 in the future. 0:13:17.520 --> 0:13:20.480 All you want to do is find the thing, find 0:13:20.640 --> 0:13:22.920 the magic wand that's going to take all of this away, 0:13:23.360 --> 0:13:25.360 And we just couldn't find it. 0:13:26.280 --> 0:13:31.880 Was it more frustrating for you because of your area 0:13:31.920 --> 0:13:35.920 of expertise. Did you blame yourself for not being able 0:13:35.960 --> 0:13:40.000 to figure it out on your own? On some levels, It's. 0:13:39.880 --> 0:13:44.120 Very interesting because I have some expertise in this area, 0:13:44.600 --> 0:13:48.440 but I think when I became like every other person 0:13:48.640 --> 0:13:51.760 or patient, your other hats go out the window. At 0:13:51.840 --> 0:13:55.640 least they did for me at the time, and I 0:13:55.640 --> 0:14:00.480 think I was so incapacitated by the symptoms that it 0:14:00.520 --> 0:14:02.839 was more just you know, fight or flight. 0:14:04.720 --> 0:14:08.360 So itch is a huge deal, right. 0:14:08.880 --> 0:14:12.640 That's doctor pil Gupta. Doctor Gupta is a Triple Board 0:14:12.640 --> 0:14:16.560 certified allergy and immunology specialist. She is also the co 0:14:16.640 --> 0:14:18.439 host of the Itch Podcast. 0:14:19.240 --> 0:14:22.520 I actually am the classic allergist. I suffer from a 0:14:22.520 --> 0:14:26.000 lot of allergies. I have asthma, I have allergies of 0:14:26.040 --> 0:14:30.359 my eyes and nose to pollen, to cats, to other animals, 0:14:30.560 --> 0:14:34.560 and I also have ezema. It is a complicated symptom 0:14:34.840 --> 0:14:39.360 and it's related to nerve fibers in the skin that 0:14:39.560 --> 0:14:42.880 send a signal to the brain, which can be triggered 0:14:42.960 --> 0:14:46.560 by many things. And sometimes it can be a vicious 0:14:46.640 --> 0:14:50.120 cycle where the more you scratch that itch, the worse 0:14:50.680 --> 0:14:53.520 those nerve fibers get, and so then you get even 0:14:53.600 --> 0:14:56.520 more itching. It's a vicious cycle for the patients. 0:14:57.080 --> 0:15:00.280 Years go by, and Kristin is still living with these 0:15:00.360 --> 0:15:04.520 unexplained flare ups that hit her without warning. Now, these 0:15:04.560 --> 0:15:08.440 periods of whole body rashes are lasting months at a time, 0:15:08.800 --> 0:15:13.240 and Kristen's doctors are still stumped. Here's Stephanie's recollection of 0:15:13.320 --> 0:15:13.960 that period. 0:15:14.960 --> 0:15:17.600 There was a long period of time where they were 0:15:17.760 --> 0:15:23.280 prescribing a kind of regiment of proton pump inhibitors, anahistamines, 0:15:23.360 --> 0:15:26.520 and all sorts of anti inflammatories to see if they 0:15:26.520 --> 0:15:28.320 could just reduce some of the inflammation. 0:15:29.000 --> 0:15:32.400 Was there anything that was giving you relief? 0:15:33.000 --> 0:15:36.440 By I would guess my thirties, maybe my forties, I 0:15:36.480 --> 0:15:39.040 had introduced fomoddine into the equation. 0:15:39.600 --> 0:15:41.120 What is that it's. 0:15:40.960 --> 0:15:44.680 More commonly known when by brand names like pepsid. And 0:15:45.520 --> 0:15:49.920 I had also used soaks that you can use for 0:15:50.000 --> 0:15:53.080 your skin to calm irritation, that you can use in 0:15:53.120 --> 0:15:56.280 the bath, things like oatmeal baths, and there are other 0:15:56.320 --> 0:15:58.400 soaks that you can buy over the counter to use. 0:15:58.440 --> 0:16:00.880 And I did find that that would be helpful. Sometimes 0:16:00.880 --> 0:16:03.240 I would even just be on the couch with a 0:16:03.320 --> 0:16:08.200 tupperware of cold water and use a washcloth against my skin, 0:16:08.280 --> 0:16:09.520 and that felt quite good. 0:16:09.760 --> 0:16:11.400 And I'm not sure it did anything, but it did 0:16:11.440 --> 0:16:12.440 feel good. In the moment. 0:16:12.880 --> 0:16:15.480 What was that time like on a day to day basis, 0:16:15.640 --> 0:16:18.200 as you're just trying to live your life. 0:16:19.200 --> 0:16:20.200 You really do adjust. 0:16:20.720 --> 0:16:24.280 You are driving your car, you are walking your dog, 0:16:24.560 --> 0:16:29.760 you are going to birthday parties, but you still have hives. Right, 0:16:30.280 --> 0:16:33.960 So it was almost like if you would get prank 0:16:34.080 --> 0:16:35.920 calls when you were younger, and you didn't know where 0:16:35.920 --> 0:16:38.600 they were coming from, and you were always looking over. 0:16:38.400 --> 0:16:41.360 Your shoulder, When is this going to happen again? 0:16:41.800 --> 0:16:44.560 It was never ending, you know, all day long. She 0:16:44.600 --> 0:16:47.840 would be in such misery, all night long, she would 0:16:47.840 --> 0:16:50.360 be in such misery. So here she is trying to 0:16:50.360 --> 0:16:53.280 make it through her day and be a professional, be 0:16:54.160 --> 0:16:57.640 her normal self to everyone on the outside, you know, 0:16:57.680 --> 0:17:00.400 and not let them know that there's anything going going on. 0:17:01.160 --> 0:17:04.040 That in and of itself is exhausting. She's trying to 0:17:04.080 --> 0:17:07.000 meet all the demands of her day, having little to 0:17:07.080 --> 0:17:10.960 no sleep because she's so miserable all night long. There's 0:17:11.040 --> 0:17:13.440 only so much of that that a person can deal 0:17:13.480 --> 0:17:15.800 with before you get to the breaking point. It's just 0:17:15.920 --> 0:17:19.200 more than people are built for. Honestly, it is torture. 0:17:20.800 --> 0:17:25.639 What was the lowest point for you? I can remember 0:17:25.640 --> 0:17:30.600 it very vividly. This was in my forties and I 0:17:30.720 --> 0:17:34.520 was on the couch, and I was so miserable that 0:17:34.600 --> 0:17:40.040 I remember thinking to myself, I understand why people kill themselves, 0:17:42.080 --> 0:17:45.239 and I didn't think I would do it. I just 0:17:45.280 --> 0:17:49.280 remember thinking to myself that I understood how they could 0:17:49.280 --> 0:17:52.200 feel like there was no future if it didn't stop. 0:17:53.160 --> 0:17:57.640 We'll be right back with Symptomatic, a medical mystery podcast. 0:17:59.080 --> 0:18:05.040 Now back to Some a medical mystery podcast. Kristin Willard 0:18:05.119 --> 0:18:09.480 has been living with pain and unpredictable rashes for two decades. 0:18:09.520 --> 0:18:12.200 At this point, these flares show up on her doorstep 0:18:12.280 --> 0:18:16.160 with no warning, staying for months on end. She's tried 0:18:16.280 --> 0:18:20.719 everything to figure out what triggers their arrival, allergen panel tests, 0:18:20.840 --> 0:18:25.879 changes in diets, avoiding fragrance, becoming increasingly selective on what 0:18:26.000 --> 0:18:29.720 is going in or near her body, but her efforts 0:18:29.760 --> 0:18:34.240 have no impact, covered in excruciating welts that itch constantly, 0:18:34.800 --> 0:18:38.000 with no clues or patterns to be found relating to 0:18:38.040 --> 0:18:41.800 their cause. Now in her forties, Kristin has lost hope 0:18:41.840 --> 0:18:45.480 that she will ever find answers and is living in 0:18:45.560 --> 0:18:49.440 her horrendous discomfort, looking down a tunnel with little light 0:18:49.560 --> 0:18:50.240 at the end. 0:18:52.840 --> 0:18:56.760 I was on the couch and I was so miserable 0:18:56.800 --> 0:19:01.520 that I remember thinking to myself, I undersunderstand why people 0:19:01.680 --> 0:19:06.200 kill themselves. I understood how they could feel like there 0:19:06.280 --> 0:19:10.359 was no future if it didn't stop. People will often 0:19:10.600 --> 0:19:15.960 compare my symptoms to many mosquito bites, and I think 0:19:16.000 --> 0:19:18.720 to myself, no, no, no, no, I have had many 0:19:18.760 --> 0:19:21.800 many mosquito bites at one time before. No one ever 0:19:21.840 --> 0:19:25.320 describes many mosquito bites as feeling like they've been skinned alive. 0:19:26.400 --> 0:19:28.560 I think it is very hard for people to understand. 0:19:28.920 --> 0:19:31.000 I think the thought is real. Take an antihistamine and 0:19:31.040 --> 0:19:36.160 they will go away, and so I think it's the duration, 0:19:36.480 --> 0:19:39.119 the severity. Those things are really hard for anyone who 0:19:39.200 --> 0:19:43.160 hasn't experienced these to wrap their mind around. And that's 0:19:43.200 --> 0:19:47.280 not their fault. I would go years without flares. But 0:19:47.359 --> 0:19:50.720 it is hard to impress upon people just how debilitating 0:19:50.760 --> 0:19:51.080 it is. 0:19:54.720 --> 0:19:59.320 When Kristen opens up about her experience, Stephanie is hit 0:19:59.480 --> 0:20:01.000 with the wait of her pain. 0:20:01.320 --> 0:20:04.639 When she would talk about what she was going through, 0:20:08.080 --> 0:20:10.160 When she would talk about what she was going through 0:20:10.320 --> 0:20:18.280 and really letting me know about how uncomfortable she was, 0:20:18.480 --> 0:20:25.680 not just in the moment within the framework of this 0:20:25.760 --> 0:20:28.160 is happening and I can't control it, and I can't 0:20:28.200 --> 0:20:31.159 stop it, and if this is the way this is 0:20:31.200 --> 0:20:36.359 going to be, I don't know that I can endure 0:20:36.400 --> 0:20:41.280 this or I want to endure this. And she would 0:20:41.320 --> 0:20:48.320 just express this exasperation, you know, just truly exasperated, and 0:20:49.359 --> 0:20:54.359 I think for most people being able to convey that 0:20:54.520 --> 0:20:58.640 to your healthcare provider in such a way that they 0:20:58.640 --> 0:21:05.480 don't see you as being hyperbolic or hysterical or attention seeking. 0:21:06.000 --> 0:21:08.040 There's all these things that you're trying to balance when 0:21:08.040 --> 0:21:10.480 you had these conversations with people to try to get 0:21:10.480 --> 0:21:12.960 them to take you seriously. I think those were the 0:21:13.040 --> 0:21:18.640 moments that maybe translated or were sensed by her healthcare 0:21:18.640 --> 0:21:23.760 team that this cannot go on. I cannot continue like this. 0:21:23.880 --> 0:21:26.919 I need help. I need something more than what I'm getting. 0:21:27.680 --> 0:21:32.560 This can't be all. The thought of this world not 0:21:32.640 --> 0:21:35.800 having her in it because of something like that is 0:21:36.119 --> 0:21:37.240 that's just unbearable. 0:21:41.640 --> 0:21:45.159 Doctor Gupta is all too familiar with the emotional and 0:21:45.200 --> 0:21:48.160 social impact of unexplained chronic illness. 0:21:49.040 --> 0:21:55.320 Oftentimes, I've also heard that relationships are altered by these symptoms. 0:21:55.560 --> 0:21:59.200 If you haven't gone through it, you don't really understand 0:22:00.040 --> 0:22:04.080 hence nature of the symptoms that you're loved on maybe experiencing. 0:22:04.400 --> 0:22:07.119 They'll be in this kind of cycle of trying to 0:22:07.160 --> 0:22:09.240 find relief and really suffering. 0:22:10.640 --> 0:22:13.720 At this point, Kristin is living with outbreaks that last 0:22:13.800 --> 0:22:17.480 as long as six months, her body covered in rashes 0:22:17.840 --> 0:22:20.959 for longer periods at a time, and the relief between 0:22:21.000 --> 0:22:25.399 flares is dwindling. Things are getting worse and worse. She 0:22:25.520 --> 0:22:28.720 decides again to seek help from a professional, but this 0:22:28.800 --> 0:22:31.840 time she finds a specialist who is an expert in 0:22:31.880 --> 0:22:36.520 the field of allergy immunology, and she is absolutely determined 0:22:36.640 --> 0:22:37.439 to get an answer. 0:22:40.000 --> 0:22:43.120 I had had an episode for it would have been 0:22:43.320 --> 0:22:48.040 longer than six weeks at this point, and I was 0:22:48.160 --> 0:22:51.439 having trouble getting relief. It's hard to say it out loud. 0:22:52.400 --> 0:22:55.479 Nothing that we would have done in the past was working. 0:22:55.960 --> 0:22:59.159 The worst part for me personally, or the first few weeks, 0:22:59.640 --> 0:23:03.000 that's where I find it hard to sit, to have 0:23:03.040 --> 0:23:06.520 a conversation like this, where I don't want to shower 0:23:06.600 --> 0:23:09.399 because of how bad it feels that my sleep is disturbed. 0:23:09.520 --> 0:23:11.919 You are managing it just as best you can. It 0:23:11.960 --> 0:23:15.359 will come and go. And you just are waiting for 0:23:15.480 --> 0:23:19.240 it to get bad again. I would never go more 0:23:19.240 --> 0:23:22.040 than twenty four hours that I can recall during that 0:23:22.160 --> 0:23:26.719 time without having pithes. I find it really traumatizing. So 0:23:26.760 --> 0:23:31.160 I went to a new allargist immunologist, and I felt 0:23:31.160 --> 0:23:34.199 this need to prove to her how miserable I was. 0:23:34.760 --> 0:23:37.919 Because it waxes in waynes Sometimes you'll show up to 0:23:37.920 --> 0:23:39.960 the doctor and your hives won't be bad. 0:23:40.040 --> 0:23:41.160 So I was prepared with. 0:23:41.160 --> 0:23:44.560 Pictures and descriptors. You know, I was ready to go, 0:23:45.119 --> 0:23:46.879 and she didn't need any of that. 0:23:47.480 --> 0:23:49.520 She believed me. She knew what it was. 0:23:50.320 --> 0:23:55.239 After twenty years of desperately seeking answers, you'd found a 0:23:55.280 --> 0:23:58.280 doctor who knew what she was looking at. What did 0:23:58.320 --> 0:23:58.720 she say? 0:23:58.960 --> 0:24:02.920 She said how Chronic spontaneous urticaria. 0:24:04.640 --> 0:24:09.320 Also known as CSU. Doctor Kupta, expert in the field 0:24:09.359 --> 0:24:12.120 of allergy and immunology, explains. 0:24:11.920 --> 0:24:17.120 Chronic spontaneous urticaria is a specific type of condition where 0:24:17.400 --> 0:24:20.720 you've had hives for at least six weeks or longer 0:24:20.760 --> 0:24:23.719 and they come and go without any rib or reason. 0:24:24.320 --> 0:24:26.280 You can get them in the morning when you wake up, 0:24:26.320 --> 0:24:29.480