1 00:00:03,760 --> 00:00:04,080 Speaker 1: Ruby. 2 00:00:06,880 --> 00:00:09,840 Speaker 2: There was one day my eyes were so flared I 3 00:00:09,880 --> 00:00:14,240 Speaker 2: couldn't see. And I remember on that day wondering, where 4 00:00:14,320 --> 00:00:14,920 Speaker 2: is this going? 5 00:00:15,000 --> 00:00:15,440 Speaker 3: What is this? 6 00:00:15,560 --> 00:00:16,520 Speaker 2: Is this getting worse? 7 00:00:17,560 --> 00:00:20,919 Speaker 1: It looks exactly like what we have. And I looked 8 00:00:20,920 --> 00:00:23,520 Speaker 1: at e in it and we just nodded. We knew, 9 00:00:24,200 --> 00:00:26,079 Speaker 1: we knew if she had it. 10 00:00:26,079 --> 00:00:29,600 Speaker 4: It's not curable. It's a genetic change. And so that's 11 00:00:29,640 --> 00:00:31,480 Speaker 4: in your body all the time. 12 00:00:31,920 --> 00:00:36,159 Speaker 2: One in three people untreated just don't wake up. Everyone 13 00:00:36,280 --> 00:00:39,360 Speaker 2: has their cross to bear. This is my this is 14 00:00:39,479 --> 00:00:42,040 Speaker 2: my burden. And now I've got a kid. 15 00:00:44,640 --> 00:00:48,400 Speaker 3: How terrifying would it be to fight an unknown enemy 16 00:00:49,080 --> 00:00:53,240 Speaker 3: one you didn't recognize and didn't see coming. What if 17 00:00:53,320 --> 00:00:56,920 Speaker 3: that enemy was coming from within a disease that even 18 00:00:57,040 --> 00:01:02,320 Speaker 3: doctors couldn't identify. Nearly half American suffer from some chronic illness, 19 00:01:02,960 --> 00:01:08,200 Speaker 3: and many struggle for an accurate diagnosis. These are their stories. 20 00:01:10,240 --> 00:01:13,440 Speaker 3: I'm Lauren Bright Pacheco and this is symptomatic. 21 00:01:19,240 --> 00:01:22,400 Speaker 2: I am from a regular, old household family. I have 22 00:01:22,440 --> 00:01:30,560 Speaker 2: one older brother, two parents, born just outside of Toronto, Ontario. 23 00:01:30,680 --> 00:01:34,960 Speaker 3: That's Ian Steadman. He is a lawyer, professor, and father 24 00:01:35,080 --> 00:01:39,520 Speaker 3: of three. Ian is a thoughtful measured speaker, extremely friendly 25 00:01:39,760 --> 00:01:40,720 Speaker 3: and quick with a joke. 26 00:01:41,120 --> 00:01:46,120 Speaker 2: Grew up like a normal suburban kid in a growing community, 27 00:01:46,600 --> 00:01:51,000 Speaker 2: went to primary school in a French immersion, and was 28 00:01:51,240 --> 00:01:54,960 Speaker 2: raised around all boys playing sports at all times. 29 00:01:55,280 --> 00:01:57,280 Speaker 3: I'm going to wager hockey was involved. 30 00:01:57,720 --> 00:02:02,680 Speaker 2: Hockey yep, definitely, Baseball, five pin bowling was one of 31 00:02:02,680 --> 00:02:05,800 Speaker 2: the things that was big back then. My youth was 32 00:02:05,840 --> 00:02:08,840 Speaker 2: spent at school and sports. 33 00:02:08,919 --> 00:02:14,120 Speaker 3: Really, so, for somebody who has not had the pleasure 34 00:02:14,280 --> 00:02:19,400 Speaker 3: of meeting Ian, how would you describe him? 35 00:02:19,520 --> 00:02:27,359 Speaker 1: Very intellectual? He can be intense, but wickedly funny and 36 00:02:27,720 --> 00:02:32,040 Speaker 1: really dedicated to his family and to making a difference 37 00:02:32,080 --> 00:02:32,600 Speaker 1: in the world. 38 00:02:35,040 --> 00:02:38,919 Speaker 3: That's Ian's mom, Barb. Barb suffered most of her life 39 00:02:38,960 --> 00:02:45,000 Speaker 3: from debilitating headaches, extreme joint pain, and unexplained rashes. When 40 00:02:45,040 --> 00:02:48,080 Speaker 3: Ian was born, it was clear to Barb that he 41 00:02:48,280 --> 00:02:52,040 Speaker 3: too was afflicted by whatever it was that was causing 42 00:02:52,160 --> 00:02:57,160 Speaker 3: her own symptoms. What is your earliest memory of thinking 43 00:02:57,720 --> 00:03:02,680 Speaker 3: he might have more in common with you in terms 44 00:03:02,760 --> 00:03:06,519 Speaker 3: of your health challenges. Do you remember seeing a symptom 45 00:03:06,560 --> 00:03:08,840 Speaker 3: and thinking this is familiar. 46 00:03:09,360 --> 00:03:12,560 Speaker 1: When he was only a few months old, we had 47 00:03:12,600 --> 00:03:15,920 Speaker 1: a family cottage and we would go there and I'd 48 00:03:15,919 --> 00:03:19,000 Speaker 1: put him under the big shade tree, but he would 49 00:03:19,000 --> 00:03:22,440 Speaker 1: come in with red blotches all over his body, and 50 00:03:22,480 --> 00:03:25,000 Speaker 1: I thought, I can't put him out there. It must 51 00:03:25,080 --> 00:03:28,799 Speaker 1: be the sun. But then even if I had him inside, 52 00:03:28,960 --> 00:03:31,919 Speaker 1: he would still get the red blotches, so I knew 53 00:03:31,919 --> 00:03:35,280 Speaker 1: that was the same as I had got and he 54 00:03:35,320 --> 00:03:36,440 Speaker 1: was only a few months old. 55 00:03:37,640 --> 00:03:42,920 Speaker 3: Your mother also navigated health challenges of her own. Tell 56 00:03:42,960 --> 00:03:46,760 Speaker 3: me your earliest childhood memories of realizing that your mother 57 00:03:47,080 --> 00:03:49,880 Speaker 3: was living with a health condition and how did that 58 00:03:50,000 --> 00:03:51,000 Speaker 3: manifest itself. 59 00:03:51,800 --> 00:03:55,720 Speaker 2: My mother had all the same symptoms. Some of them 60 00:03:55,760 --> 00:03:58,960 Speaker 2: will flare and others will not. For her, she got 61 00:03:59,000 --> 00:04:02,560 Speaker 2: really bad migraine headaches, and that would be where Mum 62 00:04:02,680 --> 00:04:05,240 Speaker 2: was in the bedroom with the lights out, and you 63 00:04:05,240 --> 00:04:07,520 Speaker 2: just leave her alone for a day until she resurfaces. 64 00:04:07,880 --> 00:04:11,240 Speaker 2: Everything else, when her skin had blotches or her eyes 65 00:04:11,280 --> 00:04:15,600 Speaker 2: were red or arthritis, she powered through. My brother never 66 00:04:15,640 --> 00:04:18,280 Speaker 2: had the symptoms, obviously, my father never did. And I 67 00:04:18,440 --> 00:04:19,760 Speaker 2: ended up with the headaches. 68 00:04:20,240 --> 00:04:22,040 Speaker 3: And when did the headache start? 69 00:04:22,320 --> 00:04:25,120 Speaker 2: When I was in middle school, right grade six, seven eight, 70 00:04:25,560 --> 00:04:28,520 Speaker 2: things really started to have an impact on my day 71 00:04:28,560 --> 00:04:30,920 Speaker 2: to day where I would be at school and I'd 72 00:04:30,960 --> 00:04:32,720 Speaker 2: have to go off to the principal's office to find 73 00:04:32,760 --> 00:04:34,480 Speaker 2: a dark room because I had a headache. 74 00:04:36,800 --> 00:04:40,039 Speaker 3: Barb hoped that Ian would be spared from the escalation 75 00:04:40,120 --> 00:04:42,680 Speaker 3: of symptoms she knew so well. 76 00:04:44,680 --> 00:04:49,080 Speaker 1: I think you just worry. You worry about how bad 77 00:04:49,320 --> 00:04:53,320 Speaker 1: it won't get for him. My hives didn't really get 78 00:04:53,360 --> 00:04:57,960 Speaker 1: bad until I was in my twenties, and so his 79 00:04:58,400 --> 00:05:01,359 Speaker 1: didn't turn up all the time time, which may be 80 00:05:01,600 --> 00:05:04,839 Speaker 1: very relieved. But then as he got to be a teenager, 81 00:05:04,960 --> 00:05:09,479 Speaker 1: they turned up almost daily, and that really worried me. 82 00:05:10,640 --> 00:05:14,320 Speaker 3: As Ian got older, he grew more self conscious about 83 00:05:14,440 --> 00:05:18,040 Speaker 3: hiding his skin covered in rashes that he did not 84 00:05:18,279 --> 00:05:19,400 Speaker 3: know how to explain. 85 00:05:20,760 --> 00:05:22,840 Speaker 2: Kids show up to hockey they could change in the 86 00:05:22,880 --> 00:05:26,440 Speaker 2: dressing room. I didn't. I showed up to hockey covered 87 00:05:26,520 --> 00:05:31,160 Speaker 2: right long sleeved shirt, long underwear, never removed them. I 88 00:05:31,160 --> 00:05:34,840 Speaker 2: would be very careful not to have more skin exposed 89 00:05:34,839 --> 00:05:36,719 Speaker 2: than necessary so that I didn't have to have people 90 00:05:36,760 --> 00:05:40,080 Speaker 2: looking at me and noticing the difference. Got to a 91 00:05:40,120 --> 00:05:42,560 Speaker 2: point where I just wouldn't wear t shirts or shorts 92 00:05:42,560 --> 00:05:45,400 Speaker 2: anymore because I didn't want it. Presents as though you 93 00:05:45,480 --> 00:05:48,240 Speaker 2: have a disease of some sort or you're reacting to something. 94 00:05:48,480 --> 00:05:52,920 Speaker 3: This rash, read well defined and raised from the skin 95 00:05:53,680 --> 00:05:57,400 Speaker 3: was not the only symptom growing more intense for Ian 96 00:05:57,839 --> 00:06:01,040 Speaker 3: as he went through puberty and started becoming a teenager. 97 00:06:01,560 --> 00:06:04,159 Speaker 3: Now you're going to doctors at the time, So were 98 00:06:04,200 --> 00:06:08,120 Speaker 3: you feeling any other symptoms in terms of pain or. 99 00:06:08,080 --> 00:06:13,120 Speaker 2: Aches constantly bloodshot eyes that I couldn't get rid of 100 00:06:13,160 --> 00:06:16,920 Speaker 2: the skin rash. I actually now have twenty percent hearing 101 00:06:16,960 --> 00:06:19,719 Speaker 2: loss in one of my ears arthritis, so I would 102 00:06:19,760 --> 00:06:22,960 Speaker 2: have joint swelling. It wasn't debilitating most of the time. 103 00:06:23,000 --> 00:06:25,520 Speaker 2: It was like the ball of my big toe or 104 00:06:25,560 --> 00:06:28,720 Speaker 2: my heel or a wrist that got in the way 105 00:06:28,760 --> 00:06:31,000 Speaker 2: of sports. As I went into adolescence as well as 106 00:06:31,000 --> 00:06:34,159 Speaker 2: the body was growing, What kind. 107 00:06:34,040 --> 00:06:37,640 Speaker 3: Of explanations are you getting in your early adolescence in 108 00:06:37,680 --> 00:06:39,440 Speaker 3: teenage years for what's going on? 109 00:06:40,080 --> 00:06:43,920 Speaker 2: The explanation was always basically the scientific way of thing. 110 00:06:44,040 --> 00:06:47,680 Speaker 2: I don't know, So chronic idiopathic urticaria was the description 111 00:06:47,800 --> 00:06:49,599 Speaker 2: that I got of my skin, which is, I don't know, 112 00:06:50,320 --> 00:06:53,160 Speaker 2: arthritis is arthritis, So you just take an anti inflammatory 113 00:06:53,320 --> 00:06:55,160 Speaker 2: or a painkiller and that sent you on your way. 114 00:06:55,160 --> 00:06:58,000 Speaker 2: They had no idea how to treat that headaches that 115 00:06:58,040 --> 00:07:00,280 Speaker 2: they don't know what to do with those, And then 116 00:07:00,480 --> 00:07:03,039 Speaker 2: the eyes was the tough one because I would jump 117 00:07:03,040 --> 00:07:06,680 Speaker 2: around from optomologist optomologists trying to figure that out. I 118 00:07:06,760 --> 00:07:09,080 Speaker 2: was just taking visin over the counter of izing to 119 00:07:09,080 --> 00:07:10,720 Speaker 2: take the retiness out whenever I could, but no one 120 00:07:10,720 --> 00:07:11,680 Speaker 2: had any explanation. 121 00:07:12,120 --> 00:07:16,040 Speaker 3: Really, every household has a doctor mom. How did your 122 00:07:16,120 --> 00:07:20,280 Speaker 3: mom help you treat those and how did she help 123 00:07:20,360 --> 00:07:25,520 Speaker 3: you navigate the emotional toll of something that she shared too. 124 00:07:26,960 --> 00:07:30,200 Speaker 2: I think the biggest thing that she did was to 125 00:07:30,320 --> 00:07:33,600 Speaker 2: insulate me from the social If there was a day 126 00:07:33,600 --> 00:07:37,840 Speaker 2: where I wasn't feeling up for normal, everyday childhood things, 127 00:07:38,400 --> 00:07:40,120 Speaker 2: it wasn't made a big deal. It wasn't like I 128 00:07:40,200 --> 00:07:42,720 Speaker 2: was letting my family down for not being able to 129 00:07:42,760 --> 00:07:45,040 Speaker 2: go to this sport or this activity, or being able 130 00:07:45,080 --> 00:07:47,520 Speaker 2: to go to school today. She was always there to 131 00:07:47,600 --> 00:07:51,760 Speaker 2: backstop that and to never make me feel like I 132 00:07:51,840 --> 00:07:55,120 Speaker 2: like my decision to not do something was a problem, 133 00:07:55,280 --> 00:07:57,440 Speaker 2: To never make me feel like I was letting anyone 134 00:07:57,480 --> 00:07:59,440 Speaker 2: down by being sick. 135 00:08:00,120 --> 00:08:04,960 Speaker 3: Did that bond you on some levels? And how did 136 00:08:05,000 --> 00:08:08,560 Speaker 3: that impact the way you mothered him? 137 00:08:09,640 --> 00:08:14,760 Speaker 1: Yeah, there's a connection because we both had we understood 138 00:08:14,760 --> 00:08:18,440 Speaker 1: how the other failed. If Ian said he had a headache, 139 00:08:18,600 --> 00:08:20,720 Speaker 1: I knew he had a headache. I didn't have any 140 00:08:20,760 --> 00:08:24,480 Speaker 1: doubts about it. When Ian always needed a jacket to 141 00:08:24,520 --> 00:08:27,520 Speaker 1: match his outfit, he got it because I knew it 142 00:08:27,560 --> 00:08:30,239 Speaker 1: wasn't to match his outfit, it was to cover the hives. 143 00:08:31,640 --> 00:08:34,680 Speaker 1: You have an awareness of how you have to care 144 00:08:34,720 --> 00:08:35,120 Speaker 1: for him. 145 00:08:37,720 --> 00:08:40,760 Speaker 3: With his mother's guidance, Ian made it through high school 146 00:08:40,840 --> 00:08:44,000 Speaker 3: and went off to college to study law, carrying with 147 00:08:44,160 --> 00:08:46,959 Speaker 3: him the tools he learned to manage his symptoms. 148 00:08:48,320 --> 00:08:50,920 Speaker 2: When I went away to university in the year two thousand, 149 00:08:51,679 --> 00:08:55,400 Speaker 2: I had learned how to deal with it, and so 150 00:08:55,480 --> 00:08:58,640 Speaker 2: I stopped worrying about it. I did what my mom 151 00:08:58,679 --> 00:09:00,280 Speaker 2: had taught me to do. Right If there was a 152 00:09:00,320 --> 00:09:02,960 Speaker 2: tough day where it was just too much, I just 153 00:09:03,000 --> 00:09:06,600 Speaker 2: didn't go. I would stay home. I did almost no 154 00:09:06,720 --> 00:09:09,800 Speaker 2: extracurriculars when I was away at university. I don't think 155 00:09:09,840 --> 00:09:13,040 Speaker 2: it progressed per se, but I do think it became 156 00:09:13,480 --> 00:09:16,640 Speaker 2: my burden. My mom couldn't shelter me from it, or 157 00:09:16,640 --> 00:09:18,880 Speaker 2: protect me from it, or buffer me from it. It 158 00:09:18,920 --> 00:09:21,880 Speaker 2: had to be me figuring out how to manage that. 159 00:09:22,600 --> 00:09:25,600 Speaker 2: I'd have flares. I'd go to bed covered in hives. 160 00:09:25,640 --> 00:09:28,480 Speaker 2: Wake up, I'd go to exams with my hat low 161 00:09:28,520 --> 00:09:31,200 Speaker 2: and sunglasses on, my arms covered up in the middle 162 00:09:31,200 --> 00:09:34,200 Speaker 2: of summer. There was a whole bunch of ways in 163 00:09:34,240 --> 00:09:37,880 Speaker 2: which the normalcy of life was interrupted by a flare. 164 00:09:38,720 --> 00:09:42,600 Speaker 3: How did you manage academically while dealing with all of that? 165 00:09:43,040 --> 00:09:47,079 Speaker 2: I think the academics were actually an escape from real life. 166 00:09:47,280 --> 00:09:50,560 Speaker 2: I mean, I stayed in post secondary for fourteen years. 167 00:09:52,920 --> 00:09:55,120 Speaker 2: It's easier to do that than to show up at 168 00:09:55,160 --> 00:09:57,880 Speaker 2: work every day. It's easier to sit in front of 169 00:09:57,920 --> 00:10:00,880 Speaker 2: your desk and read something and write an essay than 170 00:10:00,960 --> 00:10:03,320 Speaker 2: to show up and to have to be physically present 171 00:10:04,040 --> 00:10:06,199 Speaker 2: when you don't know what you're dealing with on a 172 00:10:06,240 --> 00:10:07,040 Speaker 2: day to day basis. 173 00:10:09,200 --> 00:10:12,640 Speaker 3: Are you still pushing though for a medical explanation at 174 00:10:12,640 --> 00:10:13,079 Speaker 3: this point? 175 00:10:13,400 --> 00:10:16,480 Speaker 2: Great question. During my second or third year of university, 176 00:10:16,720 --> 00:10:18,839 Speaker 2: there were a couple of weeks where I thought, oh, 177 00:10:18,840 --> 00:10:21,040 Speaker 2: I'm in London. Now I'm not in Toronto, Let's go 178 00:10:21,040 --> 00:10:23,680 Speaker 2: see what the doctor's hearsay. I ended up with the 179 00:10:23,720 --> 00:10:24,959 Speaker 2: same answers from everyone. 180 00:10:25,559 --> 00:10:28,120 Speaker 3: What would those answers have been? How were they offered, 181 00:10:28,120 --> 00:10:29,319 Speaker 3: and did you feel dismissed. 182 00:10:30,160 --> 00:10:32,720 Speaker 2: It's not like they didn't meet me and run the 183 00:10:32,760 --> 00:10:35,599 Speaker 2: tests and try to figure it out. But nobody was 184 00:10:35,640 --> 00:10:38,440 Speaker 2: piecing together anything. It was looking at arthritis and saying, well, 185 00:10:38,440 --> 00:10:40,400 Speaker 2: this is how we treat arthritis. Take an ad bill. 186 00:10:40,600 --> 00:10:42,040 Speaker 2: It was looking at a headache and saying, we'll take 187 00:10:42,040 --> 00:10:43,880 Speaker 2: a tile on all. Here are some eyedrops. It was 188 00:10:43,920 --> 00:10:46,640 Speaker 2: the same thing. And because I didn't look like I 189 00:10:46,760 --> 00:10:49,679 Speaker 2: was dying, it wasn't important to figure it out. It 190 00:10:49,720 --> 00:10:51,880 Speaker 2: was here you go, get on. So I did give up. 191 00:10:52,400 --> 00:10:54,559 Speaker 2: At the point when I went to join the workforce, 192 00:10:54,600 --> 00:10:56,800 Speaker 2: I had totally given up on searching for answers. I 193 00:10:56,840 --> 00:10:59,960 Speaker 2: figured the answer is I just got to navigate this. 194 00:11:00,920 --> 00:11:02,600 Speaker 2: I've got to find a way to make it work. 195 00:11:04,200 --> 00:11:08,480 Speaker 2: Because everyone has their cross to bear. This is mine, 196 00:11:08,760 --> 00:11:09,880 Speaker 2: this is my burden. 197 00:11:12,760 --> 00:11:17,079 Speaker 3: Doctor Ronald Laxer says this experience is common for patients 198 00:11:17,080 --> 00:11:20,680 Speaker 3: who can't be diagnosed quickly or with a common condition 199 00:11:20,880 --> 00:11:22,880 Speaker 3: that is instantly recognizable. 200 00:11:24,559 --> 00:11:28,720 Speaker 4: Patients will see their family doctor, they're pediatrician. There then 201 00:11:28,800 --> 00:11:32,319 Speaker 4: be referred to skin doctors or eye doctors and they 202 00:11:32,360 --> 00:11:38,120 Speaker 4: go through their general differential or an approach to disorders 203 00:11:38,120 --> 00:11:42,360 Speaker 4: in those systems, and it doesn't fit the usual suspects, 204 00:11:42,400 --> 00:11:45,120 Speaker 4: and so they'll often say, well, you don't have all 205 00:11:45,120 --> 00:11:48,640 Speaker 4: the things I know about, so sorry, I think you'll 206 00:11:48,679 --> 00:11:52,640 Speaker 4: have to live with it. And I think that's what 207 00:11:52,760 --> 00:11:54,280 Speaker 4: happened with Ian quite a bit. 208 00:11:55,160 --> 00:12:00,280 Speaker 3: Ian was told on multiple occasions that his symptoms were 209 00:12:00,440 --> 00:12:05,640 Speaker 3: not connected. Is that common that a doctor might not 210 00:12:05,840 --> 00:12:06,920 Speaker 3: see there is a link? 211 00:12:07,720 --> 00:12:09,680 Speaker 4: Yeah, I think that's the case. Kind of like the 212 00:12:09,679 --> 00:12:12,080 Speaker 4: blind man and the elephant, and everybody sees a different 213 00:12:12,120 --> 00:12:14,400 Speaker 4: part and calls it a trunk or a tail or 214 00:12:14,920 --> 00:12:18,120 Speaker 4: a limb. So I have to find somebody maybe who 215 00:12:18,200 --> 00:12:20,480 Speaker 4: knows about these things or is working in that area, 216 00:12:21,280 --> 00:12:24,679 Speaker 4: rather than saying I did everything I can, I'm really sorry, 217 00:12:24,720 --> 00:12:27,240 Speaker 4: I can't figure this out. And also patients get incredibly 218 00:12:27,240 --> 00:12:33,840 Speaker 4: frustrated too, So it's very impactful on the quality of life. 219 00:12:34,400 --> 00:12:37,839 Speaker 4: But the hives by themselves or the eye inflammation by 220 00:12:37,840 --> 00:12:41,120 Speaker 4: itself isn't going to I don't want to be pejorative, 221 00:12:41,120 --> 00:12:45,000 Speaker 4: but it isn't going to kill you. So everybody gets 222 00:12:45,000 --> 00:12:47,920 Speaker 4: fed up and they kind of stop looking. This is 223 00:12:47,960 --> 00:12:49,520 Speaker 4: what it is. I'm going to have to get used. 224 00:12:49,400 --> 00:12:56,640 Speaker 3: To this, and that is what Ian does. He moves forward, 225 00:12:56,880 --> 00:13:00,280 Speaker 3: carrying with him what he believes is his burden alone, 226 00:13:00,640 --> 00:13:03,640 Speaker 3: and goes on to fulfill his childhood dream of becoming 227 00:13:03,720 --> 00:13:07,600 Speaker 3: a lawyer working in private practice and then moving on 228 00:13:07,679 --> 00:13:11,120 Speaker 3: to the office of the Integrity Commissioner in the Legislative 229 00:13:11,160 --> 00:13:15,600 Speaker 3: Assembly of Ontario. Although he is succeeding in his career, 230 00:13:16,040 --> 00:13:20,960 Speaker 3: Ian symptoms continuously interrupt his ability to function. He is 231 00:13:21,080 --> 00:13:23,839 Speaker 3: often forced to ask coworkers to cover for him in 232 00:13:23,920 --> 00:13:26,920 Speaker 3: meetings because he can't even open his eyes from the 233 00:13:27,000 --> 00:13:31,320 Speaker 3: swelling or is self conscious about the redness. He's even 234 00:13:31,360 --> 00:13:33,559 Speaker 3: been forced to work out a system with his boss 235 00:13:34,000 --> 00:13:36,720 Speaker 3: in which he hides in her office and closes all 236 00:13:36,760 --> 00:13:40,720 Speaker 3: the blinds to ride out one of his horrific sneak 237 00:13:40,720 --> 00:13:44,640 Speaker 3: attack headaches. He feels that the disease has forced him 238 00:13:44,679 --> 00:13:48,320 Speaker 3: to the sidelines more than once in his career and 239 00:13:48,480 --> 00:13:55,080 Speaker 3: in his social life, including dating. Serendipitously, Ian reconnects with 240 00:13:55,120 --> 00:13:58,600 Speaker 3: an old friend from high school, Amy, and they fall 241 00:13:58,760 --> 00:14:01,040 Speaker 3: in love were. 242 00:14:00,920 --> 00:14:03,679 Speaker 2: Married in two thousand and nine. The family didn't start 243 00:14:03,800 --> 00:14:07,680 Speaker 2: until twenty twelve. We were of that generation where we 244 00:14:07,679 --> 00:14:09,480 Speaker 2: spent a year or two trying to figure out how 245 00:14:09,520 --> 00:14:12,160 Speaker 2: to make a family, and then when it did happen, 246 00:14:12,320 --> 00:14:16,840 Speaker 2: our first little girl, now thirteen, was born in twenty twelve. 247 00:14:17,679 --> 00:14:18,720 Speaker 2: It's when she joined. 248 00:14:18,559 --> 00:14:22,560 Speaker 3: Us, beautiful. What is her name? 249 00:14:23,080 --> 00:14:24,200 Speaker 2: Her name is Leah. 250 00:14:24,600 --> 00:14:28,480 Speaker 3: Yeah. What do you remember about the day Leah was born? 251 00:14:30,240 --> 00:14:35,120 Speaker 2: I remember very vividly being at the hospital and when 252 00:14:35,440 --> 00:14:40,160 Speaker 2: Leah was born what should have been the most joyful 253 00:14:40,280 --> 00:14:51,560 Speaker 2: experience of just life when we saw her happy, crying, tears, excitement, 254 00:14:52,840 --> 00:14:57,160 Speaker 2: But I saw it. I knew what it was. Immediate 255 00:14:57,200 --> 00:15:00,280 Speaker 2: anxiety came in in a moment that should have been 256 00:15:00,400 --> 00:15:05,640 Speaker 2: all pure joy and excitement. I saw her skin. It 257 00:15:05,680 --> 00:15:10,240 Speaker 2: looked like what I had. She was born basically with 258 00:15:10,560 --> 00:15:16,760 Speaker 2: red blotches on her skin. But it's interesting, right because 259 00:15:16,760 --> 00:15:18,160 Speaker 2: when a baby is born and you turn to the 260 00:15:18,160 --> 00:15:20,640 Speaker 2: doctor and say what's wrong with her skin? They say, 261 00:15:20,920 --> 00:15:24,440 Speaker 2: babies are born with they have spots on their skin. 262 00:15:25,200 --> 00:15:28,680 Speaker 2: It'll go away. But that doctor doesn't know my story 263 00:15:28,680 --> 00:15:31,320 Speaker 2: and my mom's story, our history, doesn't know what I 264 00:15:31,360 --> 00:15:32,680 Speaker 2: see when I look in the mirror, doesn't know the 265 00:15:32,720 --> 00:15:34,880 Speaker 2: anxiety that I experience every day getting up trying to 266 00:15:34,880 --> 00:15:36,960 Speaker 2: figure out what do I got to do today to 267 00:15:37,040 --> 00:15:40,680 Speaker 2: navigate my symptoms. That's exact same thing that I think 268 00:15:40,720 --> 00:15:43,920 Speaker 2: when I look at her being handed to her mother 269 00:15:44,080 --> 00:15:51,160 Speaker 2: as she's born, is oh shit, is she going to 270 00:15:51,240 --> 00:15:54,800 Speaker 2: have to live the same life? Did me giving up 271 00:15:54,840 --> 00:15:57,560 Speaker 2: on looking for answers just doom this one to the 272 00:15:57,640 --> 00:15:58,520 Speaker 2: same existence. 273 00:16:01,560 --> 00:16:06,560 Speaker 3: Ian is not alone in this fhere. Barb also recognizes 274 00:16:06,640 --> 00:16:07,920 Speaker 3: the familiar rash. 275 00:16:08,040 --> 00:16:11,720 Speaker 1: Immediately, my first thought was, of course, it's exactly what 276 00:16:11,800 --> 00:16:15,040 Speaker 1: Ian and I have. She had the rash. I just 277 00:16:15,080 --> 00:16:18,600 Speaker 1: looked at Ian and we just nodded. We knew, we 278 00:16:18,680 --> 00:16:19,560 Speaker 1: knew she had it. 279 00:16:20,920 --> 00:16:25,280 Speaker 2: This wasn't just my burden. Something was going on here. 280 00:16:26,240 --> 00:16:29,520 Speaker 3: Ian takes paternity leave to spend more time with Leah 281 00:16:29,520 --> 00:16:33,040 Speaker 3: while she grows. Though her first months are full of joy, 282 00:16:33,320 --> 00:16:37,400 Speaker 3: love and excitement, this lingering fear of what is to 283 00:16:37,440 --> 00:16:40,800 Speaker 3: come for her is ever present in Ian's mind. 284 00:16:44,000 --> 00:16:46,600 Speaker 2: It was in the three months that I took pat leeve, 285 00:16:46,640 --> 00:16:48,480 Speaker 2: you know, everything was the same. We had the kid 286 00:16:48,520 --> 00:16:49,160 Speaker 2: with the spots. 287 00:16:49,600 --> 00:16:50,040 Speaker 1: That was it. 288 00:16:50,040 --> 00:16:54,440 Speaker 2: It was just the spots. She starts walking, I want 289 00:16:54,440 --> 00:16:56,720 Speaker 2: to say, like eleven or nine and a half, ten months, 290 00:16:56,720 --> 00:16:59,320 Speaker 2: like it was right in there really early, probably because 291 00:16:59,360 --> 00:17:01,920 Speaker 2: she had so many people helping her first born, the 292 00:17:01,960 --> 00:17:07,120 Speaker 2: whole family's around right. There was a period just before 293 00:17:07,280 --> 00:17:09,600 Speaker 2: one year where she reverted to crawling. 294 00:17:11,840 --> 00:17:16,160 Speaker 1: She stopped walking because as far as Ian could tell, 295 00:17:16,359 --> 00:17:18,760 Speaker 1: her hip hurt, she had joint pain. 296 00:17:18,800 --> 00:17:21,399 Speaker 2: As she couldn't walk, something was happening. And that was 297 00:17:21,640 --> 00:17:25,399 Speaker 2: before she was verbal. She can't explain what she's experiencing 298 00:17:25,480 --> 00:17:27,280 Speaker 2: or going on. And she wasn't crying, but she just 299 00:17:27,359 --> 00:17:31,600 Speaker 2: wasn't walking anymore. That was the day the deep feeling 300 00:17:31,640 --> 00:17:37,000 Speaker 2: of failure set in, but turned into a motivation, which 301 00:17:37,080 --> 00:17:40,679 Speaker 2: was it's not good enough for me to not have 302 00:17:40,720 --> 00:17:42,120 Speaker 2: answers anymore. 303 00:17:43,640 --> 00:17:46,680 Speaker 1: More than the hide that motivated him at that point. 304 00:17:46,800 --> 00:17:50,520 Speaker 1: It was like nothing stopping me until I figure this out. 305 00:17:50,600 --> 00:17:52,840 Speaker 1: He was that good have his oatter go through the 306 00:17:52,880 --> 00:17:53,320 Speaker 1: same thing. 307 00:17:54,560 --> 00:18:03,480 Speaker 3: I can't imagine that mix of emotion and ultimately guilt 308 00:18:03,720 --> 00:18:08,560 Speaker 3: and not wanting your daughter to suffer those bouts of 309 00:18:09,000 --> 00:18:13,760 Speaker 3: shame and insecurity and pain that you had to endure. 310 00:18:15,080 --> 00:18:17,679 Speaker 2: I think you hit the nail on the head with guilt. 311 00:18:18,840 --> 00:18:22,080 Speaker 2: It's a feeling like immediately you failed as a parent. 312 00:18:23,200 --> 00:18:27,400 Speaker 2: The second feeling you have is I failed them. They 313 00:18:27,400 --> 00:18:29,600 Speaker 2: don't know it yet, but I failed them because I 314 00:18:29,600 --> 00:18:33,800 Speaker 2: didn't figure this out first. Wow, and that doesn't leave 315 00:18:33,880 --> 00:18:40,040 Speaker 2: you like that. Still to this day, that's one of 316 00:18:40,080 --> 00:18:48,160 Speaker 2: the motivating animating feelings in my life is a perpetual 317 00:18:48,480 --> 00:18:54,399 Speaker 2: fear of continuing to fail your child. At this point, 318 00:18:54,480 --> 00:18:57,240 Speaker 2: I've got a master's in philosophy, which is a research 319 00:18:57,480 --> 00:19:02,560 Speaker 2: master's a law degree. It wasn't until I had ten 320 00:19:02,760 --> 00:19:06,800 Speaker 2: years of post secondary research skills where I had the 321 00:19:07,359 --> 00:19:10,400 Speaker 2: gumption to think that I could contribute to the pursuit 322 00:19:10,920 --> 00:19:15,640 Speaker 2: of finding an answer. My wife worked at the University 323 00:19:15,640 --> 00:19:18,119 Speaker 2: of Toronto at the time, and so we had access 324 00:19:18,119 --> 00:19:22,119 Speaker 2: to the library, and so I spent every evening reading 325 00:19:22,200 --> 00:19:24,680 Speaker 2: medical journals about hives and rashs. 326 00:19:25,000 --> 00:19:27,600 Speaker 1: He was so determined to figure out what it was. 327 00:19:28,000 --> 00:19:30,760 Speaker 1: There were times when we come over and he would 328 00:19:30,800 --> 00:19:33,199 Speaker 1: be on the strangest diet because he wanted to know 329 00:19:33,280 --> 00:19:37,360 Speaker 1: for it was food, and I thought, who could eat 330 00:19:37,400 --> 00:19:41,639 Speaker 1: crawl eggs? Who was doing anything? He read to find 331 00:19:41,640 --> 00:19:42,560 Speaker 1: out what was wrong? 332 00:19:43,160 --> 00:19:44,800 Speaker 3: So you become a medical detective. 333 00:19:45,119 --> 00:19:47,000 Speaker 2: I tried. I couldn't read a medical journal for the 334 00:19:47,040 --> 00:19:49,600 Speaker 2: life of me. The words that we use in science 335 00:19:49,600 --> 00:19:52,280 Speaker 2: are much too large for Ian Stedman. So I was 336 00:19:52,320 --> 00:19:56,240 Speaker 2: reading dermatology papers, looking at pictures. Nothing you know where 337 00:19:56,280 --> 00:20:01,040 Speaker 2: I ended up ended up on Google Search. I searched 338 00:20:01,840 --> 00:20:05,080 Speaker 2: skin rash, and then I scrolled Google Images. This is 339 00:20:05,160 --> 00:20:07,320 Speaker 2: pre AIDA's right, So you can't just take a picture 340 00:20:07,359 --> 00:20:09,400 Speaker 2: of my own skin, throw it on chatchypt and say 341 00:20:09,480 --> 00:20:09,800 Speaker 2: find this. 342 00:20:10,480 --> 00:20:10,560 Speaker 3: No. 343 00:20:11,240 --> 00:20:14,040 Speaker 2: Ian had to scroll, So I scrolled and scrolled and 344 00:20:14,040 --> 00:20:16,840 Speaker 2: scrolled and scrolled. The kid goes to bed at eight o'clock. 345 00:20:16,960 --> 00:20:18,600 Speaker 2: Wife goes to bed at ten o'clock. I set up 346 00:20:18,640 --> 00:20:22,639 Speaker 2: until two o'clock, just scrolling and scrolling and scrolling. I 347 00:20:22,720 --> 00:20:27,480 Speaker 2: found one picture and Google Images that looked like me. 348 00:20:32,160 --> 00:20:35,919 Speaker 3: We'll be right back with Symptomatic, a medical mystery podcast. 349 00:20:38,960 --> 00:20:45,600 Speaker 3: Now back to Symptomatic, a medical mystery podcast. After months 350 00:20:45,600 --> 00:20:50,280 Speaker 3: of scrolling and multiple generations of lived symptoms in his family, 351 00:20:51,080 --> 00:20:55,800 Speaker 3: Ian finds a single paragraph in a sea of millions 352 00:20:56,200 --> 00:20:59,399 Speaker 3: that stops him in his tracks. Take me to that 353 00:20:59,560 --> 00:21:00,800 Speaker 3: exact moment. 354 00:21:01,359 --> 00:21:04,040 Speaker 2: Uh, you know it, it's you know exactly what it is. 355 00:21:04,119 --> 00:21:06,879 Speaker 2: I know my rash. I know what this is. I 356 00:21:06,920 --> 00:21:09,679 Speaker 2: saw it, I clicked it, and then it took me 357 00:21:09,720 --> 00:21:13,560 Speaker 2: to a man's blog who is German? So it was 358 00:21:13,640 --> 00:21:17,320 Speaker 2: written in German, so you quickly learned German. Yeah, I 359 00:21:17,359 --> 00:21:20,879 Speaker 2: have an image, but I have a trail, right, and 360 00:21:20,920 --> 00:21:23,119 Speaker 2: so I could start figuring it out. And so what 361 00:21:23,160 --> 00:21:26,000 Speaker 2: I could read on the page that was English enough 362 00:21:26,000 --> 00:21:32,120 Speaker 2: for me to figure out was three words muckle Wells syndrome. 363 00:21:32,119 --> 00:21:38,320 Speaker 3: In rome. Muckle Wells syndrome, a condition that at the 364 00:21:38,400 --> 00:21:42,119 Speaker 3: time was so rare that it was only cited to 365 00:21:42,240 --> 00:21:45,040 Speaker 3: affect one in one million people. 366 00:21:45,440 --> 00:21:47,480 Speaker 2: That was my next clue. That's the bread crumb. And 367 00:21:47,520 --> 00:21:50,680 Speaker 2: so I started googling muckle Wells and I find out 368 00:21:50,680 --> 00:21:52,919 Speaker 2: there's a couple of different symptoms of muckle Wells. Right, 369 00:21:52,920 --> 00:21:55,320 Speaker 2: there's these red eyes, these chronic red eyes. There's these 370 00:21:55,480 --> 00:22:00,920 Speaker 2: the skin hives. Obviously it's an inflammatory disease, so the arthritis. 371 00:22:01,240 --> 00:22:04,920 Speaker 2: There's headaches. Okay, Now I can go back to those 372 00:22:04,960 --> 00:22:08,760 Speaker 2: medical journals and what's in there about muchle Wells, and 373 00:22:08,800 --> 00:22:13,119 Speaker 2: I find a paper that pieces together my medical history. 374 00:22:13,600 --> 00:22:17,680 Speaker 1: I kind of hoped that he found something, because if 375 00:22:17,720 --> 00:22:19,639 Speaker 1: you have a name for something and you know what 376 00:22:19,680 --> 00:22:22,560 Speaker 1: it is, it's easier to handle it, no matter how 377 00:22:22,560 --> 00:22:26,960 Speaker 1: devastating it is. It's easier because you know what you're 378 00:22:27,000 --> 00:22:35,000 Speaker 1: dealing with. Israel as he described them to me, and 379 00:22:35,080 --> 00:22:38,760 Speaker 1: I'm going, yeah, yep, that too. All of this is together. 380 00:22:38,880 --> 00:22:42,880 Speaker 1: I couldn't believe it. All kinds of things that I 381 00:22:42,880 --> 00:22:46,040 Speaker 1: didn't realize. We're all together, and so wes he said it. 382 00:22:46,040 --> 00:22:47,200 Speaker 1: It suddenly made sense. 383 00:22:47,880 --> 00:22:51,919 Speaker 3: It clicked. The more Ian learned about the prognosis of 384 00:22:52,000 --> 00:22:55,960 Speaker 3: untreated muchael Wells, the more he understood how significant his 385 00:22:56,080 --> 00:22:57,080 Speaker 3: discovery was. 386 00:22:58,560 --> 00:23:00,760 Speaker 2: But one of the things I learned was if you're 387 00:23:00,760 --> 00:23:06,840 Speaker 2: not treated, the protein that causes the inflammation actually causes 388 00:23:06,920 --> 00:23:13,040 Speaker 2: emiloidosis in one third of Mucklewell's patients by the age 389 00:23:13,040 --> 00:23:17,840 Speaker 2: of thirty six, and emiloidosis is kidney failure. It's just 390 00:23:17,920 --> 00:23:21,000 Speaker 2: not waking up because the protein has shut down a 391 00:23:21,080 --> 00:23:25,680 Speaker 2: vital organ. So one in three people untreated with Mucklewlls 392 00:23:25,720 --> 00:23:28,760 Speaker 2: just don't wake up. My mom's over thirty six, so 393 00:23:28,800 --> 00:23:31,720 Speaker 2: she seems to have bucked the trend. I'm running up 394 00:23:31,720 --> 00:23:33,880 Speaker 2: against it, and now I've got a kid, so there's 395 00:23:33,880 --> 00:23:38,159 Speaker 2: three of us. I may have avoided death because my 396 00:23:38,320 --> 00:23:41,840 Speaker 2: daughter was born sick. If it wasn't for Leah being sick, 397 00:23:42,960 --> 00:23:44,120 Speaker 2: I may be the one in three. 398 00:23:47,040 --> 00:23:51,000 Speaker 3: How do you explain or define Mucklewell's syndrome. 399 00:23:52,320 --> 00:23:55,480 Speaker 4: Muckelwell syndrome is part of a group of disorders which 400 00:23:55,520 --> 00:23:58,760 Speaker 4: are genetic in origin, and they're associated with a mutation 401 00:23:58,960 --> 00:24:04,440 Speaker 4: and a specific gene. That gene is helpful in helping 402 00:24:04,520 --> 00:24:08,560 Speaker 4: us interact with our environment, and it protects us from 403 00:24:08,560 --> 00:24:14,199 Speaker 4: infections and from foreign chemicals. When that gene activates, it 404 00:24:14,280 --> 00:24:18,000 Speaker 4: brings several molecules together which allow our defense systems to 405 00:24:18,160 --> 00:24:22,760 Speaker 4: fight off invading organisms or chemicals which are about to 406 00:24:22,760 --> 00:24:26,200 Speaker 4: disturb the body. Now, changes in that gene may lead 407 00:24:26,240 --> 00:24:30,240 Speaker 4: to spontaneous activation of those proteins, and they may kick 408 00:24:30,280 --> 00:24:35,359 Speaker 4: off an inflammatory cascade that leads to all the signs 409 00:24:35,400 --> 00:24:39,399 Speaker 4: and symptoms of fighting off an infection. But there's nothing there. 410 00:24:40,040 --> 00:24:44,040 Speaker 3: Ready with a name. Finally, Ian must figure out his 411 00:24:44,200 --> 00:24:48,359 Speaker 3: next steps. So, armed with that information, how do you 412 00:24:48,480 --> 00:24:50,880 Speaker 3: go about getting a proper diagnosis? 413 00:24:51,080 --> 00:24:53,960 Speaker 2: Now I'm a researcher. Now I'm a lawyer. As a lawyer, 414 00:24:53,960 --> 00:24:55,800 Speaker 2: your job isn't to know the law. It's to know 415 00:24:55,840 --> 00:24:58,240 Speaker 2: how to find the answers to legal questions. How to 416 00:24:58,240 --> 00:25:00,840 Speaker 2: identify the question and then find the answer. So I 417 00:25:00,840 --> 00:25:03,720 Speaker 2: know what the question is? Now, what is Muckael Wells? 418 00:25:04,000 --> 00:25:06,600 Speaker 2: So I've found some answers in the medical journals. What's 419 00:25:06,600 --> 00:25:10,879 Speaker 2: the next question? Who in Canada knows about muckle Wells. 420 00:25:11,240 --> 00:25:14,480 Speaker 2: So I'm googling doctor Canada auto inflammatory and what I 421 00:25:14,560 --> 00:25:19,120 Speaker 2: find is two doctors, one at Sick Kids and one 422 00:25:19,359 --> 00:25:22,320 Speaker 2: formerly at Sick Kids now in Calgary. 423 00:25:22,640 --> 00:25:27,320 Speaker 3: Enter doctor Ronald Laxer from earlier. Doctor Laxer is one 424 00:25:27,400 --> 00:25:32,480 Speaker 3: of the foremost rheumatologists in Canada. Rheumatologists specialize in conditions 425 00:25:32,520 --> 00:25:37,800 Speaker 3: affecting the joints, muscles, bones, and connective tissue. Doctor Laxer 426 00:25:37,960 --> 00:25:42,360 Speaker 3: is internationally recognized in the field of auto inflammatory disease 427 00:25:42,880 --> 00:25:47,000 Speaker 3: and was an inaugural division head at Sick Kids. This 428 00:25:47,160 --> 00:25:50,840 Speaker 3: is the moment in Ian's story where their paths cross 429 00:25:50,840 --> 00:25:54,320 Speaker 3: and life changes for his family forever. 430 00:25:55,800 --> 00:25:57,520 Speaker 4: I just happened to be in the right place at 431 00:25:57,520 --> 00:26:00,600 Speaker 4: the right time for him, and I have been doing 432 00:26:00,640 --> 00:26:05,120 Speaker 4: this clinic. It's called auto inflammatory Clinic, and I'm very 433 00:26:05,160 --> 00:26:08,800 Speaker 4: interested in these diseases and making the diagnoses and getting 434 00:26:08,840 --> 00:26:09,760 Speaker 4: drugs to patience. 435 00:26:10,320 --> 00:26:12,240 Speaker 2: I kind of cold email this talk to her in 436 00:26:12,280 --> 00:26:15,160 Speaker 2: the middle of nowhere, and you can imagine like this 437 00:26:15,200 --> 00:26:17,520 Speaker 2: is a blur because from the day that I found 438 00:26:17,680 --> 00:26:21,160 Speaker 2: the picture to the email to the doctor, like it's 439 00:26:21,200 --> 00:26:25,240 Speaker 2: within seventy two hours. I'm just spinning, but I send 440 00:26:25,280 --> 00:26:28,240 Speaker 2: him this email. His name is doctor Ron lax Or. 441 00:26:28,240 --> 00:26:32,359 Speaker 2: He's a very senior, very respected roeumatologist at Sick Kids. 442 00:26:33,119 --> 00:26:36,200 Speaker 2: With this description, with the pictures, with my daughter's story. 443 00:26:37,359 --> 00:26:39,600 Speaker 2: I wake up the next day at eight am. I 444 00:26:39,600 --> 00:26:43,119 Speaker 2: have a response in my inbox. This is the first 445 00:26:43,160 --> 00:26:47,800 Speaker 2: time I've ever spoken to a medical professional and felt 446 00:26:47,800 --> 00:26:52,800 Speaker 2: like they listened and understood something and believed me. Was 447 00:26:52,880 --> 00:26:55,199 Speaker 2: him replying and saying, I think you're onto something. 448 00:26:56,680 --> 00:26:59,639 Speaker 3: What Ian did not know at the time was that 449 00:27:00,080 --> 00:27:04,240 Speaker 3: doctor Laxer received this email while getting ready to present 450 00:27:04,320 --> 00:27:07,119 Speaker 3: to a room full of leading rheumatologists. 451 00:27:10,080 --> 00:27:13,240 Speaker 4: I was at a conference in Denmark and I was 452 00:27:13,280 --> 00:27:16,439 Speaker 4: presenting a whole bunch of different cases, challenging cases to 453 00:27:16,480 --> 00:27:20,399 Speaker 4: the audience and just to see what they think it is, 454 00:27:20,440 --> 00:27:22,159 Speaker 4: what kind of tests they would do. And one of 455 00:27:22,160 --> 00:27:23,800 Speaker 4: them that I had on my list to present was 456 00:27:23,880 --> 00:27:28,240 Speaker 4: Michael Wells. So I talked about the case that I 457 00:27:28,280 --> 00:27:30,320 Speaker 4: received a couple of hours before the talk. 458 00:27:31,560 --> 00:27:37,240 Speaker 3: So you were basically unofficially diagnosed by a convention of rheumatologists. 459 00:27:37,520 --> 00:27:38,400 Speaker 2: It's amazing, right. 460 00:27:40,480 --> 00:27:42,560 Speaker 3: What did doctor Laxer say next? 461 00:27:42,920 --> 00:27:45,960 Speaker 2: Get yourself a referral to Sick kids under Leah's name, 462 00:27:46,160 --> 00:27:46,840 Speaker 2: come with her. 463 00:27:47,240 --> 00:27:50,560 Speaker 3: I need to see you, okay, so you bring Leah 464 00:27:50,760 --> 00:27:51,360 Speaker 3: to see him. 465 00:27:51,560 --> 00:27:53,440 Speaker 2: I actually had to go back to an adult doctor 466 00:27:53,480 --> 00:27:55,760 Speaker 2: who I'd seen before, and I told him, I want 467 00:27:55,760 --> 00:27:58,320 Speaker 2: to referral to sick kids to see doctor Ron Laxer 468 00:27:58,400 --> 00:28:01,920 Speaker 2: for this disease, Michael Wells. And this adult rheumatologist said, 469 00:28:01,920 --> 00:28:04,600 Speaker 2: that's not it. I'm not giving you that referral people 470 00:28:04,640 --> 00:28:08,240 Speaker 2: with muckle Wells. It's a very severe disease. I don't 471 00:28:08,280 --> 00:28:10,960 Speaker 2: see people with that. That's not what you have. So 472 00:28:11,000 --> 00:28:14,000 Speaker 2: I had to show him the email from doctor Laxer 473 00:28:14,200 --> 00:28:17,359 Speaker 2: saying get in, and then he read the email and 474 00:28:17,400 --> 00:28:22,000 Speaker 2: then apparently he had studied under doctor Laxer, and so 475 00:28:22,040 --> 00:28:24,679 Speaker 2: when he saw the name on the email, he stopped 476 00:28:24,720 --> 00:28:25,520 Speaker 2: second guessing me. 477 00:28:25,840 --> 00:28:28,639 Speaker 4: I'm a pediatrician, so it means in my hospital, I 478 00:28:28,800 --> 00:28:32,240 Speaker 4: really can only see patients up to the age of eighteen, 479 00:28:33,000 --> 00:28:34,919 Speaker 4: and I have to get permission to see adults. So 480 00:28:34,960 --> 00:28:38,240 Speaker 4: I had to do that, and I was pretty confident 481 00:28:38,280 --> 00:28:41,880 Speaker 4: based on what Ian had written. And we're a research 482 00:28:41,880 --> 00:28:44,680 Speaker 4: hospital and a teaching hospital at the hospital for six children, 483 00:28:44,800 --> 00:28:48,440 Speaker 4: and so there are always trainees around and it's very 484 00:28:48,440 --> 00:28:51,080 Speaker 4: important for them to see things like this, so if 485 00:28:51,080 --> 00:28:52,760 Speaker 4: they see it once, they won't forget it. 486 00:28:54,600 --> 00:28:56,640 Speaker 2: I'm at the Sick Kid's Hospital. I'm thirty two years old. 487 00:28:56,680 --> 00:28:59,440 Speaker 2: I'm sitting on a bed in an exam room in 488 00:28:59,480 --> 00:29:02,400 Speaker 2: my underwear because he's looking at me. And then all 489 00:29:02,400 --> 00:29:05,000 Speaker 2: of a sudden, there's a parade of rheumatologists come in 490 00:29:05,920 --> 00:29:08,880 Speaker 2: to Pope kin prod and point and ask questions. 491 00:29:09,120 --> 00:29:11,560 Speaker 4: And I asked aame's permission if I could bring a 492 00:29:11,600 --> 00:29:14,400 Speaker 4: group in, and we had about six to ten people 493 00:29:14,440 --> 00:29:16,760 Speaker 4: come in. Maybe maybe it was a little bit of 494 00:29:16,800 --> 00:29:20,200 Speaker 4: a turnstile sort of thing. Ian was great. He kept 495 00:29:20,240 --> 00:29:22,680 Speaker 4: telling the story. Is so important to hear the story. 496 00:29:24,120 --> 00:29:26,400 Speaker 4: It was a very memorable day for many of us. 497 00:29:27,720 --> 00:29:30,760 Speaker 2: No one's ever cared before. Right for me in that moment, 498 00:29:30,840 --> 00:29:33,200 Speaker 2: I don't care if there's thirty forty to fifty of them. 499 00:29:33,440 --> 00:29:38,000 Speaker 2: They're asking me questions. I wasn't just this chronic idiopathic sedment. 500 00:29:38,360 --> 00:29:41,560 Speaker 2: Not anymore. Now there's a bunch of people who are 501 00:29:41,640 --> 00:29:49,800 Speaker 2: very smart, caring to find out more and ask questions. 502 00:29:50,000 --> 00:29:51,920 Speaker 3: Why do you think it's so important to hear these 503 00:29:51,960 --> 00:29:52,880 Speaker 3: patient stories. 504 00:29:54,320 --> 00:29:59,360 Speaker 4: I think they're much more impactful than your sterilized history 505 00:29:59,400 --> 00:30:02,280 Speaker 4: where you go through through by wrote a series of questions. 506 00:30:02,800 --> 00:30:05,160 Speaker 4: When you hear about the impact that it's having, it, 507 00:30:05,400 --> 00:30:09,080 Speaker 4: I think it's much more compelling in terms of making 508 00:30:09,080 --> 00:30:12,720 Speaker 4: you want to solve the problem and helping the patients 509 00:30:12,720 --> 00:30:16,240 Speaker 4: and families. You hear about the significant impact on their 510 00:30:16,280 --> 00:30:20,720 Speaker 4: lives and their education and how they grew up and 511 00:30:20,760 --> 00:30:23,040 Speaker 4: how they may have been treated, how they look at 512 00:30:23,040 --> 00:30:26,400 Speaker 4: the world, And that's not what you get in your 513 00:30:26,440 --> 00:30:30,280 Speaker 4: standard history and physical I think storytelling has become a 514 00:30:30,320 --> 00:30:34,600 Speaker 4: much more important part of medicine, much more prominent role 515 00:30:34,680 --> 00:30:37,760 Speaker 4: in education, getting people to tell their stories. 516 00:30:40,120 --> 00:30:44,200 Speaker 3: So for thirty two years, you lived your life afraid 517 00:30:44,280 --> 00:30:48,440 Speaker 3: of being seen because of the physical manifestations, and this 518 00:30:48,520 --> 00:30:51,800 Speaker 3: is the first time you truly feel seen by the 519 00:30:51,840 --> 00:30:52,680 Speaker 3: medical community. 520 00:30:53,920 --> 00:30:56,400 Speaker 2: Isn't that something? But I'm also sitting there with my 521 00:30:56,480 --> 00:31:01,160 Speaker 2: daughter right I'm at the point now where knowledge is power. 522 00:31:01,680 --> 00:31:04,560 Speaker 2: I want an answer, even if the answer is here's 523 00:31:04,680 --> 00:31:06,360 Speaker 2: the name of it, but we don't know what to 524 00:31:06,400 --> 00:31:09,880 Speaker 2: do with it. Because if I don't have information, I 525 00:31:09,920 --> 00:31:15,000 Speaker 2: can't figure out my next step. And I explain to him, 526 00:31:15,000 --> 00:31:17,600 Speaker 2: how you know, I haven't worn shorts and t shirts 527 00:31:17,600 --> 00:31:20,720 Speaker 2: and years, and one of the most vivid memories I 528 00:31:20,720 --> 00:31:24,360 Speaker 2: have in my life bar none, is him turning to 529 00:31:24,400 --> 00:31:27,080 Speaker 2: me while I'm sitting there in my underwear and saying, 530 00:31:28,120 --> 00:31:32,520 Speaker 2: we'll have you in shorts by summer. And I'll never forget. 531 00:31:33,000 --> 00:31:35,680 Speaker 2: I'll never forget him saying that to me, because as 532 00:31:35,720 --> 00:31:38,760 Speaker 2: a doctor with a rare disease patient in front of you, 533 00:31:38,840 --> 00:31:42,720 Speaker 2: you don't make promises. He's not saying I know what's 534 00:31:42,760 --> 00:31:45,120 Speaker 2: wrong with you. He's saying, I have a solution. 535 00:31:46,720 --> 00:31:47,480 Speaker 1: Holy shit. 536 00:31:48,520 --> 00:31:53,000 Speaker 2: The floor drops out right. I'm emotional thinking about the moment. 537 00:31:54,000 --> 00:31:58,880 Speaker 2: I can't relive it without reliving it fully. It just 538 00:31:59,000 --> 00:32:01,080 Speaker 2: runs through me those things. 539 00:32:02,120 --> 00:32:05,480 Speaker 3: When you got your daughter's diagnosis, you knew that you 540 00:32:05,600 --> 00:32:10,160 Speaker 3: had gotten it from the right person and she was 541 00:32:10,200 --> 00:32:13,560 Speaker 3: in the best hands possible. Tell me about calling your 542 00:32:13,600 --> 00:32:16,640 Speaker 3: mom once you had an official diagnosis. 543 00:32:16,960 --> 00:32:18,800 Speaker 2: I had said, we need to get you in to 544 00:32:18,840 --> 00:32:22,400 Speaker 2: get tested as well. So we all have we all 545 00:32:22,400 --> 00:32:24,800 Speaker 2: have this record of getting our panels back and the 546 00:32:24,840 --> 00:32:30,760 Speaker 2: confirmed Michael Wells diagnosis. Leah first, me, second month, third. 547 00:32:32,000 --> 00:32:35,520 Speaker 1: And so I went in and I already knew that 548 00:32:35,560 --> 00:32:37,560 Speaker 1: if that's what I had had and what Leah had 549 00:32:37,600 --> 00:32:39,640 Speaker 1: and that's what I had, but they had to confirm 550 00:32:39,720 --> 00:32:43,959 Speaker 1: it and it was a relief. It was a relief 551 00:32:44,040 --> 00:32:47,680 Speaker 1: to say, Okay, this is what it is. But it 552 00:32:47,720 --> 00:32:50,640 Speaker 1: was also for me a little bit of a guilt 553 00:32:50,640 --> 00:32:52,000 Speaker 1: trip because I felt this is what. 554 00:32:51,960 --> 00:32:57,640 Speaker 3: I gave them. Once all three generations have received their diagnosis, 555 00:32:58,040 --> 00:33:03,480 Speaker 3: they turned to doctor Laxer for treatment. Is it curable 556 00:33:03,800 --> 00:33:07,440 Speaker 3: and how is it treated? What's the most effective treatment. 557 00:33:07,840 --> 00:33:11,920 Speaker 4: It's not curable. It's a genetic change and so that's 558 00:33:11,960 --> 00:33:16,400 Speaker 4: in your body all the time. But it is very 559 00:33:16,520 --> 00:33:21,960 Speaker 4: treatable with drugs that block the proteins that result from 560 00:33:22,000 --> 00:33:26,080 Speaker 4: this gene mutation. So it makes these inflammation proteins, and 561 00:33:26,120 --> 00:33:29,920 Speaker 4: there are drugs now available which counteract those proteins and 562 00:33:29,960 --> 00:33:31,520 Speaker 4: they're extremely effective. 563 00:33:32,280 --> 00:33:36,760 Speaker 3: So what does treatment look like as far as the delivery. 564 00:33:36,880 --> 00:33:40,880 Speaker 2: There's an injectable drug that plugs the protein, so just 565 00:33:40,920 --> 00:33:44,120 Speaker 2: stops the body from producing the protein entirely. And the 566 00:33:44,200 --> 00:33:48,240 Speaker 2: challenge here now is that it's sixteen thousand dollars every injection, 567 00:33:48,440 --> 00:33:52,200 Speaker 2: and there is eight weeks between each injection, so sixteen 568 00:33:52,200 --> 00:33:55,360 Speaker 2: thousand dollars every eight weeks for this needle that effectively 569 00:33:55,400 --> 00:33:58,280 Speaker 2: takes away my one in three chances of death by thirty. 570 00:33:58,000 --> 00:34:01,440 Speaker 3: Six teen thousand dollars. 571 00:34:01,640 --> 00:34:05,040 Speaker 2: Yeah, and that's a miracle biologic drug for sure. 572 00:34:05,200 --> 00:34:10,000 Speaker 3: Yeah, for you, for your daughter, and for your mother. 573 00:34:10,360 --> 00:34:12,960 Speaker 2: Yes, and that that's the next step in our journey 574 00:34:13,040 --> 00:34:14,440 Speaker 2: is how do we get access to this drug? 575 00:34:15,160 --> 00:34:17,640 Speaker 3: At this time, Ian is blessed with a job that 576 00:34:17,680 --> 00:34:20,880 Speaker 3: provides his family with the level of health care support 577 00:34:21,040 --> 00:34:22,439 Speaker 3: necessary to treat them. 578 00:34:22,800 --> 00:34:25,880 Speaker 2: If I want to change my job, I no longer 579 00:34:25,880 --> 00:34:28,839 Speaker 2: have access to the life saving medicine that I need 580 00:34:28,960 --> 00:34:31,720 Speaker 2: and my daughter needs. So one of the first things 581 00:34:31,760 --> 00:34:35,239 Speaker 2: that we did as a young couple was to sell 582 00:34:35,280 --> 00:34:37,640 Speaker 2: the first home we ever owned together and to move 583 00:34:37,680 --> 00:34:38,640 Speaker 2: back in with her parents. 584 00:34:39,960 --> 00:34:41,080 Speaker 3: How did you handle that? 585 00:34:41,520 --> 00:34:43,640 Speaker 2: The first thing that I said to her after we 586 00:34:43,719 --> 00:34:45,799 Speaker 2: figured out that we had access to this drug was 587 00:34:45,840 --> 00:34:50,560 Speaker 2: We'll never be without it. Our daughter can never be 588 00:34:50,640 --> 00:34:53,880 Speaker 2: without this medicine. That's always going to be there in 589 00:34:53,920 --> 00:34:56,680 Speaker 2: case we need it. And that was not a small decision. 590 00:34:57,120 --> 00:35:00,200 Speaker 2: It's a step back in the kind of community society 591 00:35:00,239 --> 00:35:01,040 Speaker 2: that I was raised in. 592 00:35:01,400 --> 00:35:05,160 Speaker 3: So now you have a safety net in case of emergency, 593 00:35:05,280 --> 00:35:08,680 Speaker 3: but you will need this life sustaining treatment for the 594 00:35:08,680 --> 00:35:11,680 Speaker 3: rest of your lives. What are the next steps to 595 00:35:11,800 --> 00:35:14,799 Speaker 3: ensure that you all have that access. 596 00:35:15,280 --> 00:35:19,800 Speaker 2: Under doctor Laxer's mentorship, I ended up getting more involved 597 00:35:19,880 --> 00:35:23,920 Speaker 2: in learning about health care policy and law. He started 598 00:35:23,960 --> 00:35:27,960 Speaker 2: introducing me to people there's a Canadian organization for rare disorders, 599 00:35:28,560 --> 00:35:30,279 Speaker 2: and then I ended up getting involved in going to 600 00:35:30,320 --> 00:35:32,840 Speaker 2: conferences and learning a little bit more about health policy 601 00:35:32,880 --> 00:35:36,239 Speaker 2: in the rare disease space. So that's what we did 602 00:35:36,239 --> 00:35:40,880 Speaker 2: with doctor at Laxer's help. We petitioned my wife's employer's 603 00:35:40,960 --> 00:35:45,080 Speaker 2: formulary to add the drug. It took eight months and 604 00:35:45,120 --> 00:35:46,920 Speaker 2: then they said we've added it to the formulary. 605 00:35:48,520 --> 00:35:52,720 Speaker 3: Formularies are lists of approved medication that are covered. Because 606 00:35:52,800 --> 00:35:56,840 Speaker 3: Canada does not have a universal national formulary, these lists 607 00:35:56,880 --> 00:36:02,560 Speaker 3: can vary between provinces, territories, and third party insurance providers. 608 00:36:02,880 --> 00:36:06,000 Speaker 2: So now we get to submit for reimbursement. And so 609 00:36:06,040 --> 00:36:09,600 Speaker 2: the first time we submitted under her plan, they denied us. 610 00:36:10,840 --> 00:36:13,680 Speaker 2: And they denied us because the science was so unsettled 611 00:36:13,800 --> 00:36:17,160 Speaker 2: in this space that they said we needed to try 612 00:36:17,280 --> 00:36:21,120 Speaker 2: steroids first, So we needed to pump our daughter full 613 00:36:21,120 --> 00:36:24,960 Speaker 2: of steroids before they would give her this life saving medicine. 614 00:36:25,080 --> 00:36:27,720 Speaker 2: And so doctor laxer, like I said before, just salt 615 00:36:27,760 --> 00:36:32,960 Speaker 2: of the earth. Incredible human he just like Hulk. What 616 00:36:33,120 --> 00:36:35,200 Speaker 2: they want me to shove? Steroids and a two year 617 00:36:35,239 --> 00:36:38,440 Speaker 2: old girl? When the standard of care is published, he 618 00:36:38,480 --> 00:36:42,800 Speaker 2: wrote them. He got their decision reversed and we started 619 00:36:42,840 --> 00:36:47,080 Speaker 2: to see formularies. Now my mum's formularity had it. And 620 00:36:47,080 --> 00:36:51,520 Speaker 2: then slowly over time, every major formulary in Canada has 621 00:36:51,520 --> 00:36:52,320 Speaker 2: added this drug. 622 00:36:54,680 --> 00:36:59,080 Speaker 3: That's amazing and you were part of that domino effect 623 00:36:59,280 --> 00:37:02,120 Speaker 3: part of it. So tell me the impact that this 624 00:37:03,040 --> 00:37:06,799 Speaker 3: miracle drug had on all three of your lives and 625 00:37:06,920 --> 00:37:09,360 Speaker 3: how long did it take to see the impact. 626 00:37:10,400 --> 00:37:13,359 Speaker 2: So we took the medicine. We woke up the next 627 00:37:13,440 --> 00:37:15,960 Speaker 2: day and it was a light switch. It was all 628 00:37:16,040 --> 00:37:16,919 Speaker 2: gone the next day. 629 00:37:17,640 --> 00:37:20,919 Speaker 1: The day I got my first needle was a last 630 00:37:21,000 --> 00:37:23,080 Speaker 1: day I had pain. Last day I had a headache, 631 00:37:23,160 --> 00:37:24,400 Speaker 1: last day I had hives. 632 00:37:24,680 --> 00:37:25,480 Speaker 3: What was that like? 633 00:37:26,400 --> 00:37:30,759 Speaker 1: That was like the promise of a real retirement, that 634 00:37:30,920 --> 00:37:34,839 Speaker 1: retirement where I'm not using a cane. I'm seventy six, 635 00:37:34,920 --> 00:37:36,960 Speaker 1: I don't have to use a cane or anything. I 636 00:37:37,520 --> 00:37:40,480 Speaker 1: run a walking group. I can be as active as 637 00:37:40,480 --> 00:37:43,640 Speaker 1: I want because I don't have a headache and my 638 00:37:43,680 --> 00:37:47,600 Speaker 1: eyes are too sorry to go outside. It's like a 639 00:37:47,680 --> 00:37:51,160 Speaker 1: life given to me that's not full of limitation. 640 00:37:52,760 --> 00:37:56,080 Speaker 3: And for Leah, how has the treatment affected her life? 641 00:37:56,840 --> 00:37:59,160 Speaker 2: So we're very fortunate that, I would say by the 642 00:37:59,200 --> 00:38:02,440 Speaker 2: time we hadn't met, she had just started to become 643 00:38:02,600 --> 00:38:07,160 Speaker 2: self aware of the spots. But then the medicine was 644 00:38:07,280 --> 00:38:10,680 Speaker 2: a week later and it was gone overnight. So she 645 00:38:10,880 --> 00:38:13,480 Speaker 2: never really lived a life where she was self conscious 646 00:38:13,480 --> 00:38:16,239 Speaker 2: of any of it. And that's good and bad. It's 647 00:38:16,239 --> 00:38:18,319 Speaker 2: something that my wife and I talk about quite a bit. 648 00:38:18,760 --> 00:38:23,920 Speaker 2: It's our job to help her experience her baseline of 649 00:38:23,960 --> 00:38:27,160 Speaker 2: not being sick right, but at the same time, it's 650 00:38:27,239 --> 00:38:29,640 Speaker 2: part of her identity that we have to inform her about. 651 00:38:30,080 --> 00:38:32,640 Speaker 2: She's going to have to navigate her adult life of 652 00:38:32,840 --> 00:38:36,920 Speaker 2: access to this medicine. She can't just have any job 653 00:38:37,040 --> 00:38:40,160 Speaker 2: and any employer and any life she wants. Her life 654 00:38:40,160 --> 00:38:42,640 Speaker 2: does have to in some sense revolve around how to 655 00:38:42,760 --> 00:38:47,080 Speaker 2: maintain access to a therapeutic that keeps her alive. That's 656 00:38:47,120 --> 00:38:48,719 Speaker 2: not a small burden to put on a kid. 657 00:38:49,480 --> 00:38:54,640 Speaker 3: Of course, despite that burden, this treatment works and has 658 00:38:54,760 --> 00:38:58,840 Speaker 3: had a profound effect. What have you seen Leah do 659 00:38:59,280 --> 00:39:02,719 Speaker 3: in her life? Life that you perhaps struggle to do 660 00:39:02,800 --> 00:39:03,400 Speaker 3: in yours. 661 00:39:04,200 --> 00:39:08,759 Speaker 2: She's an athlete, she's her body does what she wants 662 00:39:08,760 --> 00:39:12,239 Speaker 2: it to do. She's not limited by it. She's the 663 00:39:12,320 --> 00:39:17,520 Speaker 2: youngest kid to ever take this medicine. So technically we 664 00:39:17,640 --> 00:39:20,799 Speaker 2: don't really know the long term effects of turning off 665 00:39:20,800 --> 00:39:24,239 Speaker 2: this part of your immune system. It's an immunosuppressant. This 666 00:39:24,360 --> 00:39:27,239 Speaker 2: protein is part of your immune system when it's properly functioning, 667 00:39:28,120 --> 00:39:30,040 Speaker 2: so we don't know the long term effects. She's been 668 00:39:30,120 --> 00:39:33,839 Speaker 2: very lucky. There's not much that Leah says I want 669 00:39:33,840 --> 00:39:35,440 Speaker 2: to do that she can't do. 670 00:39:37,840 --> 00:39:40,880 Speaker 3: Passionate to help others outside of his family. Ian is 671 00:39:40,960 --> 00:39:44,440 Speaker 3: a steering committee member for the Canadian Rare Disease Network, 672 00:39:44,760 --> 00:39:47,440 Speaker 3: is the chair of the board for the Canadian Auto 673 00:39:47,480 --> 00:39:50,960 Speaker 3: Inflammatory Network, and is a fellow in AI law and 674 00:39:51,080 --> 00:39:55,080 Speaker 3: ethics at the Hospital for Sick Children. He has become 675 00:39:55,200 --> 00:39:58,920 Speaker 3: a formidable advocate for those like him who are living 676 00:39:59,040 --> 00:40:00,239 Speaker 3: with rare diseases. 677 00:40:00,800 --> 00:40:04,480 Speaker 2: When I realized how much information about me was trapped 678 00:40:04,520 --> 00:40:08,640 Speaker 2: in my doctor's handwritten notes, Mike doctor when we were diagnosed, 679 00:40:08,680 --> 00:40:10,920 Speaker 2: thought that we were number eleven, twelve and thirteen in Canada. 680 00:40:10,960 --> 00:40:13,320 Speaker 2: With Michael Wells disease, And I asked him, how do 681 00:40:13,400 --> 00:40:15,279 Speaker 2: you know that? He says, well, because I've talked to 682 00:40:15,320 --> 00:40:18,200 Speaker 2: other doctors, and that's my guest. It's a ballpark. But 683 00:40:18,280 --> 00:40:20,359 Speaker 2: if he wanted to know how the doctor in Nova 684 00:40:20,360 --> 00:40:24,000 Speaker 2: Scotia treated their patient with Michael Wells, he'd have to 685 00:40:24,000 --> 00:40:26,640 Speaker 2: get the doctor and the patient's permission, And you'd have 686 00:40:26,680 --> 00:40:29,040 Speaker 2: to know that they exist first of all, to share 687 00:40:29,040 --> 00:40:31,880 Speaker 2: that data, to share their story, to share their medical records. 688 00:40:32,640 --> 00:40:36,319 Speaker 2: It's just locked away in cabinets. And I think that's 689 00:40:36,360 --> 00:40:38,359 Speaker 2: the power of telling our stories and talking and being 690 00:40:38,400 --> 00:40:43,120 Speaker 2: open and engaging with patients and engaging with communities, is 691 00:40:43,120 --> 00:40:46,319 Speaker 2: that we're starting to realize that there's so much more 692 00:40:46,440 --> 00:40:50,560 Speaker 2: underneath the surface that we didn't see before. Let's just 693 00:40:50,600 --> 00:40:52,840 Speaker 2: shine a light on it. Now. 694 00:40:52,920 --> 00:40:56,160 Speaker 3: Are you surprised in any way, shape or form that 695 00:40:56,320 --> 00:41:01,440 Speaker 3: Ian's work has now morphed into helping others in the 696 00:41:01,520 --> 00:41:02,600 Speaker 3: rare condition space. 697 00:41:03,640 --> 00:41:07,440 Speaker 1: No, I'm not surprised at all. Ian has has always 698 00:41:07,520 --> 00:41:10,799 Speaker 1: been a really caring person. To see him now know 699 00:41:10,920 --> 00:41:13,759 Speaker 1: that he doesn't have limitations. He doesn't have a day 700 00:41:13,760 --> 00:41:16,319 Speaker 1: when he doesn't want to be on camera because verd 701 00:41:16,360 --> 00:41:20,799 Speaker 1: eye or hive is wonderful because I've always seen Ian 702 00:41:20,880 --> 00:41:25,000 Speaker 1: as a child with enormous potential as a human being 703 00:41:25,080 --> 00:41:28,880 Speaker 1: to do whatever he wants. When he found his answer, 704 00:41:29,080 --> 00:41:31,680 Speaker 1: just kept going and saying, I'm taking this to everybody. 705 00:41:32,200 --> 00:41:33,560 Speaker 1: This isn't surprising at all. 706 00:41:33,960 --> 00:41:37,000 Speaker 3: When you look back at your own life, do you 707 00:41:37,080 --> 00:41:40,399 Speaker 3: ever feel a sense of grief for what you may 708 00:41:40,440 --> 00:41:43,640 Speaker 3: have lost in those years that you went untreated for 709 00:41:43,760 --> 00:41:44,920 Speaker 3: muckle Wells? 710 00:41:45,880 --> 00:41:45,920 Speaker 5: No. 711 00:41:46,120 --> 00:41:49,840 Speaker 1: I think who we are and what happens to us, 712 00:41:49,840 --> 00:41:52,680 Speaker 1: this one who makes us who we are. I learned 713 00:41:53,400 --> 00:41:56,800 Speaker 1: learned how to deal with pain. I learned how to 714 00:41:56,840 --> 00:42:00,200 Speaker 1: be more compassionate to others because my pain wasn't it's 715 00:42:00,320 --> 00:42:02,960 Speaker 1: all And I think it's all about moving forward. And 716 00:42:03,719 --> 00:42:06,279 Speaker 1: that's what he did. He moved forward and found a 717 00:42:06,320 --> 00:42:11,000 Speaker 1: cure for all of us. Though, No, I have no regrets. 718 00:42:12,040 --> 00:42:14,840 Speaker 3: When you look back on your mom's experience with this condition, 719 00:42:15,719 --> 00:42:19,919 Speaker 3: the years she's spent struggling, but also the incredible feat 720 00:42:19,920 --> 00:42:25,360 Speaker 3: of moving forward despite the tremendous pain and the challenges, 721 00:42:26,440 --> 00:42:28,400 Speaker 3: how do you feel. 722 00:42:29,840 --> 00:42:33,000 Speaker 2: There was a point where I thought of my mother's 723 00:42:33,000 --> 00:42:37,399 Speaker 2: efforts as not being enough, And it isn't until I've 724 00:42:38,360 --> 00:42:43,279 Speaker 2: had time to reflect and to find, for lack of 725 00:42:43,280 --> 00:42:45,759 Speaker 2: a better word, grace for what the experience must have 726 00:42:45,800 --> 00:42:52,520 Speaker 2: been for her. That I've come to realize the power 727 00:42:52,640 --> 00:42:58,200 Speaker 2: of her effort. Whatever the diagnosis has given her, I'm 728 00:42:58,200 --> 00:43:01,160 Speaker 2: grateful for, But I'm even more grateful now for what 729 00:43:03,080 --> 00:43:05,640 Speaker 2: she was able to give to me despite not having 730 00:43:05,640 --> 00:43:07,080 Speaker 2: that diagnosis. 731 00:43:08,719 --> 00:43:10,040 Speaker 3: But I also I. 732 00:43:09,960 --> 00:43:12,879 Speaker 2: Feel relief in the idea that maybe I was able 733 00:43:12,920 --> 00:43:19,400 Speaker 2: to pay your jeez, to give her something in return 734 00:43:20,360 --> 00:43:24,759 Speaker 2: for that which must have been an impossible effort on 735 00:43:24,840 --> 00:43:27,520 Speaker 2: her part in the sacrifices she made to make sure 736 00:43:27,520 --> 00:43:29,080 Speaker 2: that I wasn't making sacrifices. 737 00:43:32,960 --> 00:43:36,000 Speaker 3: What do you hope that people take away from Ian's 738 00:43:36,000 --> 00:43:42,200 Speaker 3: story and in connection to it, Leah and barb story. 739 00:43:41,719 --> 00:43:47,000 Speaker 4: The power of the patient to not give up, to 740 00:43:47,040 --> 00:43:52,120 Speaker 4: continue to advocate if you're convinced about something, don't take 741 00:43:52,160 --> 00:43:57,080 Speaker 4: no for an answer. When you listen to stories, it's 742 00:43:57,120 --> 00:44:00,759 Speaker 4: not just as adopters. You're listening to some story as 743 00:44:00,800 --> 00:44:05,920 Speaker 4: a fellow human being. And we have the same feelings, 744 00:44:05,920 --> 00:44:10,600 Speaker 4: We have families, we have children, we empathize completely. I 745 00:44:10,640 --> 00:44:13,880 Speaker 4: think that's one of the very important messages of this story. 746 00:44:13,760 --> 00:44:18,279 Speaker 3: A story and a diagnosis that changed three generations of 747 00:44:18,280 --> 00:44:22,960 Speaker 3: a family showing up in profound and profoundly simple ways. 748 00:44:24,320 --> 00:44:27,720 Speaker 2: After having the medicine, we went grocery shopping. The family 749 00:44:27,760 --> 00:44:30,719 Speaker 2: went it. It was spring, it was almost summer. We 750 00:44:30,760 --> 00:44:32,880 Speaker 2: went grocery shopping. It was too cold. But I got 751 00:44:32,960 --> 00:44:34,800 Speaker 2: home and I realized that I just went grocery shopping 752 00:44:34,800 --> 00:44:36,799 Speaker 2: and shorts and a T shirt. I realized that after 753 00:44:36,840 --> 00:44:39,600 Speaker 2: I got home, I hadn't thought about it. And as 754 00:44:39,640 --> 00:44:42,799 Speaker 2: it sank in, as it settled in, I sent an 755 00:44:42,840 --> 00:44:46,120 Speaker 2: email to doctor Laxer and the woman who was assisting him, 756 00:44:46,120 --> 00:44:48,560 Speaker 2: the nurse at the time, and I sent them an 757 00:44:48,560 --> 00:44:50,960 Speaker 2: email and I said, I just wanted you to know 758 00:44:51,080 --> 00:44:54,480 Speaker 2: that I just went grocery shopping and shorts and a 759 00:44:54,520 --> 00:44:59,880 Speaker 2: T shirt. And it's such a nothing burger, but it 760 00:45:00,280 --> 00:45:03,000 Speaker 2: so much And to this day, like that's one of 761 00:45:03,000 --> 00:45:07,239 Speaker 2: the emails that stands out for him too. How how 762 00:45:07,280 --> 00:45:09,160 Speaker 2: it all came full circle. I'll have you in shorts 763 00:45:10,360 --> 00:45:13,200 Speaker 2: and then it just happened, And it just happened. I 764 00:45:13,280 --> 00:45:15,960 Speaker 2: was comfortable enough to do it without even thinking about it. 765 00:45:19,160 --> 00:45:22,680 Speaker 3: You can learn more about the Canadian auto inflammatory network 766 00:45:22,960 --> 00:45:29,239 Speaker 3: at www. Dot auto inflammatory dot CA, Sick KIDCA can 767 00:45:29,280 --> 00:45:33,839 Speaker 3: be found online at www dot sick KIDSCA. 768 00:45:34,760 --> 00:45:37,640 Speaker 2: My name is Ian Stedman. I live with a rare 769 00:45:37,680 --> 00:45:41,480 Speaker 2: disease called Michael Well syndrome, and I spent thirty two 770 00:45:41,560 --> 00:45:46,879 Speaker 2: years looking for a diagnosis before finally landing on one 771 00:45:47,040 --> 00:45:50,560 Speaker 2: after my first daughter was born with the same disease. 772 00:45:53,840 --> 00:45:58,080 Speaker 3: Coming up on next week's episode of Symptomatic. For as 773 00:45:58,120 --> 00:46:02,160 Speaker 3: long as Sienna Dtree can remember, she's had random bouts 774 00:46:02,160 --> 00:46:06,200 Speaker 3: of heavy legs, headaches, and loss of vision. As she 775 00:46:06,280 --> 00:46:10,200 Speaker 3: got older, that heavy sensation grew into episodes in which 776 00:46:10,239 --> 00:46:12,239 Speaker 3: she could not move altogether. 777 00:46:12,760 --> 00:46:15,719 Speaker 5: I was shaking the director's hand, getting these flowers the 778 00:46:15,719 --> 00:46:20,080 Speaker 5: whole nine yards, and my smile it became hard to smile, 779 00:46:20,760 --> 00:46:23,359 Speaker 5: and I realized all of my arms and legs were 780 00:46:23,400 --> 00:46:26,520 Speaker 5: like starting to feel like really heavy. Everybody else left 781 00:46:26,560 --> 00:46:29,040 Speaker 5: the stage, and I couldn't get up to leave the stage. 782 00:46:29,160 --> 00:46:31,359 Speaker 5: The band director caught me out side of his eye, 783 00:46:31,400 --> 00:46:33,239 Speaker 5: and he came back, and my parents came up from 784 00:46:33,280 --> 00:46:36,520 Speaker 5: the audience while Sienna is still on the stage. My 785 00:46:36,640 --> 00:46:40,400 Speaker 5: parents took me to the er because they were just like, 786 00:46:40,440 --> 00:46:43,600 Speaker 5: this is not normal, even for you. 787 00:46:44,320 --> 00:46:47,879 Speaker 3: Years would pass before Sienna would get a seemingly out 788 00:46:47,880 --> 00:46:52,120 Speaker 3: of the blue phone call from her doctor that changed everything. 789 00:46:53,680 --> 00:46:56,399 Speaker 3: As always, we would love to hear from you. Send 790 00:46:56,480 --> 00:46:59,160 Speaker 3: us your thoughts on this episode, or share a medical 791 00:46:59,200 --> 00:47:03,320 Speaker 3: mystery of your own at Symptomatic at iHeartMedia dot com 792 00:47:04,120 --> 00:47:08,240 Speaker 3: and please rate and review Symptomatic wherever you get your podcasts. 793 00:47:08,680 --> 00:47:13,799 Speaker 3: We'll see you next time, and until then, be well. Symptomatic, 794 00:47:13,960 --> 00:47:20,319 Speaker 3: a medical mystery podcast, is a production of iHeartMedia's Ruby Studio. 795 00:47:20,480 --> 00:47:23,839 Speaker 3: Our show is hosted by me Lauren Bright Pacheco. Our 796 00:47:23,880 --> 00:47:28,719 Speaker 3: executive producers are James Foster, Matt Ramano, and myself. Our 797 00:47:28,800 --> 00:47:34,839 Speaker 3: supervising producers are Ryan Ovadia, Haley Aliah Ericsson, and Daniel Ainsworth. 798 00:47:35,560 --> 00:47:39,560 Speaker 3: This episode was written by Haley Aliah Ericsson and edited 799 00:47:39,719 --> 00:47:41,160 Speaker 3: by Daniel Ainsworth.