WEBVTT - Case #28: Ian 0:00:03.760 --> 0:00:04.080 Ruby. 0:00:06.880 --> 0:00:09.840 There was one day my eyes were so flared I 0:00:09.880 --> 0:00:14.240 couldn't see. And I remember on that day wondering, where 0:00:14.320 --> 0:00:14.920 is this going? 0:00:15.000 --> 0:00:15.440 What is this? 0:00:15.560 --> 0:00:16.520 Is this getting worse? 0:00:17.560 --> 0:00:20.919 It looks exactly like what we have. And I looked 0:00:20.920 --> 0:00:23.520 at e in it and we just nodded. We knew, 0:00:24.200 --> 0:00:26.079 we knew if she had it. 0:00:26.079 --> 0:00:29.600 It's not curable. It's a genetic change. And so that's 0:00:29.640 --> 0:00:31.480 in your body all the time. 0:00:31.920 --> 0:00:36.159 One in three people untreated just don't wake up. Everyone 0:00:36.280 --> 0:00:39.360 has their cross to bear. This is my this is 0:00:39.479 --> 0:00:42.040 my burden. And now I've got a kid. 0:00:44.640 --> 0:00:48.400 How terrifying would it be to fight an unknown enemy 0:00:49.080 --> 0:00:53.240 one you didn't recognize and didn't see coming. What if 0:00:53.320 --> 0:00:56.920 that enemy was coming from within a disease that even 0:00:57.040 --> 0:01:02.320 doctors couldn't identify. Nearly half American suffer from some chronic illness, 0:01:02.960 --> 0:01:08.200 and many struggle for an accurate diagnosis. These are their stories. 0:01:10.240 --> 0:01:13.440 I'm Lauren Bright Pacheco and this is symptomatic. 0:01:19.240 --> 0:01:22.400 I am from a regular, old household family. I have 0:01:22.440 --> 0:01:30.560 one older brother, two parents, born just outside of Toronto, Ontario. 0:01:30.680 --> 0:01:34.960 That's Ian Steadman. He is a lawyer, professor, and father 0:01:35.080 --> 0:01:39.520 of three. Ian is a thoughtful measured speaker, extremely friendly 0:01:39.760 --> 0:01:40.720 and quick with a joke. 0:01:41.120 --> 0:01:46.120 Grew up like a normal suburban kid in a growing community, 0:01:46.600 --> 0:01:51.000 went to primary school in a French immersion, and was 0:01:51.240 --> 0:01:54.960 raised around all boys playing sports at all times. 0:01:55.280 --> 0:01:57.280 I'm going to wager hockey was involved. 0:01:57.720 --> 0:02:02.680 Hockey yep, definitely, Baseball, five pin bowling was one of 0:02:02.680 --> 0:02:05.800 the things that was big back then. My youth was 0:02:05.840 --> 0:02:08.840 spent at school and sports. 0:02:08.919 --> 0:02:14.120 Really, so, for somebody who has not had the pleasure 0:02:14.280 --> 0:02:19.400 of meeting Ian, how would you describe him? 0:02:19.520 --> 0:02:27.359 Very intellectual? He can be intense, but wickedly funny and 0:02:27.720 --> 0:02:32.040 really dedicated to his family and to making a difference 0:02:32.080 --> 0:02:32.600 in the world. 0:02:35.040 --> 0:02:38.919 That's Ian's mom, Barb. Barb suffered most of her life 0:02:38.960 --> 0:02:45.000 from debilitating headaches, extreme joint pain, and unexplained rashes. When 0:02:45.040 --> 0:02:48.080 Ian was born, it was clear to Barb that he 0:02:48.280 --> 0:02:52.040 too was afflicted by whatever it was that was causing 0:02:52.160 --> 0:02:57.160 her own symptoms. What is your earliest memory of thinking 0:02:57.720 --> 0:03:02.680 he might have more in common with you in terms 0:03:02.760 --> 0:03:06.519 of your health challenges. Do you remember seeing a symptom 0:03:06.560 --> 0:03:08.840 and thinking this is familiar. 0:03:09.360 --> 0:03:12.560 When he was only a few months old, we had 0:03:12.600 --> 0:03:15.920 a family cottage and we would go there and I'd 0:03:15.919 --> 0:03:19.000 put him under the big shade tree, but he would 0:03:19.000 --> 0:03:22.440 come in with red blotches all over his body, and 0:03:22.480 --> 0:03:25.000 I thought, I can't put him out there. It must 0:03:25.080 --> 0:03:28.799 be the sun. But then even if I had him inside, 0:03:28.960 --> 0:03:31.919 he would still get the red blotches, so I knew 0:03:31.919 --> 0:03:35.280 that was the same as I had got and he 0:03:35.320 --> 0:03:36.440 was only a few months old. 0:03:37.640 --> 0:03:42.920 Your mother also navigated health challenges of her own. Tell 0:03:42.960 --> 0:03:46.760 me your earliest childhood memories of realizing that your mother 0:03:47.080 --> 0:03:49.880 was living with a health condition and how did that 0:03:50.000 --> 0:03:51.000 manifest itself. 0:03:51.800 --> 0:03:55.720 My mother had all the same symptoms. Some of them 0:03:55.760 --> 0:03:58.960 will flare and others will not. For her, she got 0:03:59.000 --> 0:04:02.560 really bad migraine headaches, and that would be where Mum 0:04:02.680 --> 0:04:05.240 was in the bedroom with the lights out, and you 0:04:05.240 --> 0:04:07.520 just leave her alone for a day until she resurfaces. 0:04:07.880 --> 0:04:11.240 Everything else, when her skin had blotches or her eyes 0:04:11.280 --> 0:04:15.600 were red or arthritis, she powered through. My brother never 0:04:15.640 --> 0:04:18.280 had the symptoms, obviously, my father never did. And I 0:04:18.440 --> 0:04:19.760 ended up with the headaches. 0:04:20.240 --> 0:04:22.040 And when did the headache start? 0:04:22.320 --> 0:04:25.120 When I was in middle school, right grade six, seven eight, 0:04:25.560 --> 0:04:28.520 things really started to have an impact on my day 0:04:28.560 --> 0:04:30.920 to day where I would be at school and I'd 0:04:30.960 --> 0:04:32.720 have to go off to the principal's office to find 0:04:32.760 --> 0:04:34.480 a dark room because I had a headache. 0:04:36.800 --> 0:04:40.039 Barb hoped that Ian would be spared from the escalation 0:04:40.120 --> 0:04:42.680 of symptoms she knew so well. 0:04:44.680 --> 0:04:49.080 I think you just worry. You worry about how bad 0:04:49.320 --> 0:04:53.320 it won't get for him. My hives didn't really get 0:04:53.360 --> 0:04:57.960 bad until I was in my twenties, and so his 0:04:58.400 --> 0:05:01.359 didn't turn up all the time time, which may be 0:05:01.600 --> 0:05:04.839 very relieved. But then as he got to be a teenager, 0:05:04.960 --> 0:05:09.479 they turned up almost daily, and that really worried me. 0:05:10.640 --> 0:05:14.320 As Ian got older, he grew more self conscious about 0:05:14.440 --> 0:05:18.040 hiding his skin covered in rashes that he did not 0:05:18.279 --> 0:05:19.400 know how to explain. 0:05:20.760 --> 0:05:22.840 Kids show up to hockey they could change in the 0:05:22.880 --> 0:05:26.440 dressing room. I didn't. I showed up to hockey covered 0:05:26.520 --> 0:05:31.160 right long sleeved shirt, long underwear, never removed them. I 0:05:31.160 --> 0:05:34.840 would be very careful not to have more skin exposed 0:05:34.839 --> 0:05:36.719 than necessary so that I didn't have to have people 0:05:36.760 --> 0:05:40.080 looking at me and noticing the difference. Got to a 0:05:40.120 --> 0:05:42.560 point where I just wouldn't wear t shirts or shorts 0:05:42.560 --> 0:05:45.400 anymore because I didn't want it. Presents as though you 0:05:45.480 --> 0:05:48.240 have a disease of some sort or you're reacting to something. 0:05:48.480 --> 0:05:52.920 This rash, read well defined and raised from the skin 0:05:53.680 --> 0:05:57.400 was not the only symptom growing more intense for Ian 0:05:57.839 --> 0:06:01.040 as he went through puberty and started becoming a teenager. 0:06:01.560 --> 0:06:04.159 Now you're going to doctors at the time, So were 0:06:04.200 --> 0:06:08.120 you feeling any other symptoms in terms of pain or. 0:06:08.080 --> 0:06:13.120 Aches constantly bloodshot eyes that I couldn't get rid of 0:06:13.160 --> 0:06:16.920 the skin rash. I actually now have twenty percent hearing 0:06:16.960 --> 0:06:19.719 loss in one of my ears arthritis, so I would 0:06:19.760 --> 0:06:22.960 have joint swelling. It wasn't debilitating most of the time. 0:06:23.000 --> 0:06:25.520 It was like the ball of my big toe or 0:06:25.560 --> 0:06:28.720 my heel or a wrist that got in the way 0:06:28.760 --> 0:06:31.000 of sports. As I went into adolescence as well as 0:06:31.000 --> 0:06:34.159 the body was growing, What kind. 0:06:34.040 --> 0:06:37.640 Of explanations are you getting in your early adolescence in 0:06:37.680 --> 0:06:39.440 teenage years for what's going on? 0:06:40.080 --> 0:06:43.920 The explanation was always basically the scientific way of thing. 0:06:44.040 --> 0:06:47.680 I don't know, So chronic idiopathic urticaria was the description 0:06:47.800 --> 0:06:49.599 that I got of my skin, which is, I don't know, 0:06:50.320 --> 0:06:53.160 arthritis is arthritis, So you just take an anti inflammatory 0:06:53.320 --> 0:06:55.160 or a painkiller and that sent you on your way. 0:06:55.160 --> 0:06:58.000 They had no idea how to treat that headaches that 0:06:58.040 --> 0:07:00.280 they don't know what to do with those, And then 0:07:00.480 --> 0:07:03.039 the eyes was the tough one because I would jump 0:07:03.040 --> 0:07:06.680 around from optomologist optomologists trying to figure that out. I 0:07:06.760 --> 0:07:09.080 was just taking visin over the counter of izing to 0:07:09.080 --> 0:07:10.720 take the retiness out whenever I could, but no one 0:07:10.720 --> 0:07:11.680 had any explanation. 0:07:12.120 --> 0:07:16.040 Really, every household has a doctor mom. How did your 0:07:16.120 --> 0:07:20.280 mom help you treat those and how did she help 0:07:20.360 --> 0:07:25.520 you navigate the emotional toll of something that she shared too. 0:07:26.960 --> 0:07:30.200 I think the biggest thing that she did was to 0:07:30.320 --> 0:07:33.600 insulate me from the social If there was a day 0:07:33.600 --> 0:07:37.840 where I wasn't feeling up for normal, everyday childhood things, 0:07:38.400 --> 0:07:40.120 it wasn't made a big deal. It wasn't like I 0:07:40.200 --> 0:07:42.720 was letting my family down for not being able to 0:07:42.760 --> 0:07:45.040 go to this sport or this activity, or being able 0:07:45.080 --> 0:07:47.520 to go to school today. She was always there to 0:07:47.600 --> 0:07:51.760 backstop that and to never make me feel like I 0:07:51.840 --> 0:07:55.120 like my decision to not do something was a problem, 0:07:55.280 --> 0:07:57.440 To never make me feel like I was letting anyone 0:07:57.480 --> 0:07:59.440 down by being sick. 0:08:00.120 --> 0:08:04.960 Did that bond you on some levels? And how did 0:08:05.000 --> 0:08:08.560 that impact the way you mothered him? 0:08:09.640 --> 0:08:14.760 Yeah, there's a connection because we both had we understood 0:08:14.760 --> 0:08:18.440 how the other failed. If Ian said he had a headache, 0:08:18.600 --> 0:08:20.720 I knew he had a headache. I didn't have any 0:08:20.760 --> 0:08:24.480 doubts about it. When Ian always needed a jacket to 0:08:24.520 --> 0:08:27.520 match his outfit, he got it because I knew it 0:08:27.560 --> 0:08:30.239 wasn't to match his outfit, it was to cover the hives. 0:08:31.640 --> 0:08:34.680 You have an awareness of how you have to care 0:08:34.720 --> 0:08:35.120 for him. 0:08:37.720 --> 0:08:40.760 With his mother's guidance, Ian made it through high school 0:08:40.840 --> 0:08:44.000 and went off to college to study law, carrying with 0:08:44.160 --> 0:08:46.959 him the tools he learned to manage his symptoms. 0:08:48.320 --> 0:08:50.920 When I went away to university in the year two thousand, 0:08:51.679 --> 0:08:55.400 I had learned how to deal with it, and so 0:08:55.480 --> 0:08:58.640 I stopped worrying about it. I did what my mom 0:08:58.679 --> 0:09:00.280 had taught me to do. Right If there was a 0:09:00.320 --> 0:09:02.960 tough day where it was just too much, I just 0:09:03.000 --> 0:09:06.600 didn't go. I would stay home. I did almost no 0:09:06.720 --> 0:09:09.800 extracurriculars when I was away at university. I don't think 0:09:09.840 --> 0:09:13.040 it progressed per se, but I do think it became 0:09:13.480 --> 0:09:16.640 my burden. My mom couldn't shelter me from it, or 0:09:16.640 --> 0:09:18.880 protect me from it, or buffer me from it. It 0:09:18.920 --> 0:09:21.880 had to be me figuring out how to manage that. 0:09:22.600 --> 0:09:25.600 I'd have flares. I'd go to bed covered in hives. 0:09:25.640 --> 0:09:28.480 Wake up, I'd go to exams with my hat low 0:09:28.520 --> 0:09:31.200 and sunglasses on, my arms covered up in the middle 0:09:31.200 --> 0:09:34.200 of summer. There was a whole bunch of ways in 0:09:34.240 --> 0:09:37.880 which the normalcy of life was interrupted by a flare. 0:09:38.720 --> 0:09:42.600 How did you manage academically while dealing with all of that? 0:09:43.040 --> 0:09:47.079 I think the academics were actually an escape from real life. 0:09:47.280 --> 0:09:50.560 I mean, I stayed in post secondary for fourteen years. 0:09:52.920 --> 0:09:55.120 It's easier to do that than to show up at 0:09:55.160 --> 0:09:57.880 work every day. It's easier to sit in front of 0:09:57.920 --> 0:10:00.880 your desk and read something and write an essay than 0:10:00.960 --> 0:10:03.320 to show up and to have to be physically present 0:10:04.040 --> 0:10:06.199 when you don't know what you're dealing with on a 0:10:06.240 --> 0:10:07.040 day to day basis. 0:10:09.200 --> 0:10:12.640 Are you still pushing though for a medical explanation at 0:10:12.640 --> 0:10:13.079 this point? 0:10:13.400 --> 0:10:16.480 Great question. During my second or third year of university, 0:10:16.720 --> 0:10:18.839 there were a couple of weeks where I thought, oh, 0:10:18.840 --> 0:10:21.040 I'm in London. Now I'm not in Toronto, Let's go 0:10:21.040 --> 0:10:23.680 see what the doctor's hearsay. I ended up with the 0:10:23.720 --> 0:10:24.959 same answers from everyone. 0:10:25.559 --> 0:10:28.120 What would those answers have been? How were they offered, 0:10:28.120 --> 0:10:29.319 and did you feel dismissed. 0:10:30.160 --> 0:10:32.720 It's not like they didn't meet me and run the 0:10:32.760 --> 0:10:35.599 tests and try to figure it out. But nobody was 0:10:35.640 --> 0:10:38.440 piecing together anything. It was looking at arthritis and saying, well, 0:10:38.440 --> 0:10:40.400 this is how we treat arthritis. Take an ad bill. 0:10:40.600 --> 0:10:42.040 It was looking at a headache and saying, we'll take 0:10:42.040 --> 0:10:43.880 a tile on all. Here are some eyedrops. It was 0:10:43.920 --> 0:10:46.640 the same thing. And because I didn't look like I 0:10:46.760 --> 0:10:49.679 was dying, it wasn't important to figure it out. It 0:10:49.720 --> 0:10:51.880 was here you go, get on. So I did give up. 0:10:52.400 --> 0:10:54.559 At the point when I went to join the workforce, 0:10:54.600 --> 0:10:56.800 I had totally given up on searching for answers. I 0:10:56.840 --> 0:10:59.960 figured the answer is I just got to navigate this. 0:11:00.920 --> 0:11:02.600 I've got to find a way to make it work. 0:11:04.200 --> 0:11:08.480 Because everyone has their cross to bear. This is mine, 0:11:08.760 --> 0:11:09.880 this is my burden. 0:11:12.760 --> 0:11:17.079 Doctor Ronald Laxer says this experience is common for patients 0:11:17.080 --> 0:11:20.680 who can't be diagnosed quickly or with a common condition 0:11:20.880 --> 0:11:22.880 that is instantly recognizable. 0:11:24.559 --> 0:11:28.720 Patients will see their family doctor, they're pediatrician. There then 0:11:28.800 --> 0:11:32.319 be referred to skin doctors or eye doctors and they 0:11:32.360 --> 0:11:38.120 go through their general differential or an approach to disorders 0:11:38.120 --> 0:11:42.360 in those systems, and it doesn't fit the usual suspects, 0:11:42.400 --> 0:11:45.120 and so they'll often say, well, you don't have all 0:11:45.120 --> 0:11:48.640 the things I know about, so sorry, I think you'll 0:11:48.679 --> 0:11:52.640 have to live with it. And I think that's what 0:11:52.760 --> 0:11:54.280 happened with Ian quite a bit. 0:11:55.160 --> 0:12:00.280 Ian was told on multiple occasions that his symptoms were 0:12:00.440 --> 0:12:05.640 not connected. Is that common that a doctor might not 0:12:05.840 --> 0:12:06.920 see there is a link? 0:12:07.720 --> 0:12:09.680 Yeah, I think that's the case. Kind of like the 0:12:09.679 --> 0:12:12.080 blind man and the elephant, and everybody sees a different 0:12:12.120 --> 0:12:14.400 part and calls it a trunk or a tail or 0:12:14.920 --> 0:12:18.120 a limb. So I have to find somebody maybe who 0:12:18.200 --> 0:12:20.480 knows about these things or is working in that area, 0:12:21.280 --> 0:12:24.679 rather than saying I did everything I can, I'm really sorry, 0:12:24.720 --> 0:12:27.240 I can't figure this out. And also patients get incredibly 0:12:27.240 --> 0:12:33.840 frustrated too, So it's very impactful on the quality of life. 0:12:34.400 --> 0:12:37.839 But the hives by themselves or the eye inflammation by 0:12:37.840 --> 0:12:41.120 itself isn't going to I don't want to be pejorative, 0:12:41.120 --> 0:12:45.000 but it isn't going to kill you. So everybody gets 0:12:45.000 --> 0:12:47.920 fed up and they kind of stop looking. This is 0:12:47.960 --> 0:12:49.520 what it is. I'm going to have to get used. 0:12:49.400 --> 0:12:56.640 To this, and that is what Ian does. He moves forward, 0:12:56.880 --> 0:13:00.280 carrying with him what he believes is his burden alone, 0:13:00.640 --> 0:13:03.640 and goes on to fulfill his childhood dream of becoming 0:13:03.720 --> 0:13:07.600 a lawyer working in private practice and then moving on 0:13:07.679 --> 0:13:11.120 to the office of the Integrity Commissioner in the Legislative 0:13:11.160 --> 0:13:15.600 Assembly of Ontario. Although he is succeeding in his career, 0:13:16.040 --> 0:13:20.960 Ian symptoms continuously interrupt his ability to function. He is 0:13:21.080 --> 0:13:23.839 often forced to ask coworkers to cover for him in 0:13:23.920 --> 0:13:26.920 meetings because he can't even open his eyes from the 0:13:27.000 --> 0:13:31.320 swelling or is self conscious about the redness. He's even 0:13:31.360 --> 0:13:33.559 been forced to work out a system with his boss 0:13:34.000 --> 0:13:36.720 in which he hides in her office and closes all 0:13:36.760 --> 0:13:40.720 the blinds to ride out one of his horrific sneak 0:13:40.720 --> 0:13:44.640 attack headaches. He feels that the disease has forced him 0:13:44.679 --> 0:13:48.320 to the sidelines more than once in his career and 0:13:48.480 --> 0:13:55.080 in his social life, including dating. Serendipitously, Ian reconnects with 0:13:55.120 --> 0:13:58.600 an old friend from high school, Amy, and they fall 0:13:58.760 --> 0:14:01.040 in love were. 0:14:00.920 --> 0:14:03.679 Married in two thousand and nine. The family didn't start 0:14:03.800 --> 0:14:07.680 until twenty twelve. We were of that generation where we 0:14:07.679 --> 0:14:09.480 spent a year or two trying to figure out how 0:14:09.520 --> 0:14:12.160 to make a family, and then when it did happen, 0:14:12.320 --> 0:14:16.840 our first little girl, now thirteen, was born in twenty twelve. 0:14:17.679 --> 0:14:18.720 It's when she joined. 0:14:18.559 --> 0:14:22.560 Us, beautiful. What is her name? 0:14:23.080 --> 0:14:24.200 Her name is Leah. 0:14:24.600 --> 0:14:28.480 Yeah. What do you remember about the day Leah was born? 0:14:30.240 --> 0:14:35.120 I remember very vividly being at the hospital and when 0:14:35.440 --> 0:14:40.160 Leah was born what should have been the most joyful 0:14:40.280 --> 0:14:51.560 experience of just life when we saw her happy, crying, tears, excitement, 0:14:52.840 --> 0:14:57.160 But I saw it. I knew what it was. Immediate 0:14:57.200 --> 0:15:00.280 anxiety came in in a moment that should have been 0:15:00.400 --> 0:15:05.640 all pure joy and excitement. I saw her skin. It 0:15:05.680 --> 0:15:10.240 looked like what I had. She was born basically with 0:15:10.560 --> 0:15:16.760 red blotches on her skin. But it's interesting, right because 0:15:16.760 --> 0:15:18.160 when a baby is born and you turn to the 0:15:18.160 --> 0:15:20.640 doctor and say what's wrong with her skin? They say, 0:15:20.920 --> 0:15:24.440 babies are born with they have spots on their skin. 0:15:25.200 --> 0:15:28.680 It'll go away. But that doctor doesn't know my story 0:15:28.680 --> 0:15:31.320 and my mom's story, our history, doesn't know what I 0:15:31.360 --> 0:15:32.680 see when I look in the mirror, doesn't know the 0:15:32.720 --> 0:15:34.880 anxiety that I experience every day getting up trying to 0:15:34.880 --> 0:15:36.960 figure out what do I got to do today to 0:15:37.040 --> 0:15:40.680 navigate my symptoms. That's exact same thing that I think 0:15:40.720 --> 0:15:43.920 when I look at her being handed to her mother 0:15:44.080 --> 0:15:51.160 as she's born, is oh shit, is she going to 0:15:51.240 --> 0:15:54.800 have to live the same life? Did me giving up 0:15:54.840 --> 0:15:57.560 on looking for answers just doom this one to the 0:15:57.640 --> 0:15:58.520 same existence. 0:16:01.560 --> 0:16:06.560 Ian is not alone in this fhere. Barb also recognizes 0:16:06.640 --> 0:16:07.920 the familiar rash. 0:16:08.040 --> 0:16:11.720 Immediately, my first thought was, of course, it's exactly what 0:16:11.800 --> 0:16:15.040 Ian and I have. She had the rash. I just 0:16:15.080 --> 0:16:18.600 looked at Ian and we just nodded. We knew, we 0:16:18.680 --> 0:16:19.560 knew she had it. 0:16:20.920 --> 0:16:25.280 This wasn't just my burden. Something was going on here. 0:16:26.240 --> 0:16:29.520 Ian takes paternity leave to spend more time with Leah 0:16:29.520 --> 0:16:33.040 while she grows. Though her first months are full of joy, 0:16:33.320 --> 0:16:37.400 love and excitement, this lingering fear of what is to 0:16:37.440 --> 0:16:40.800 come for her is ever present in Ian's mind. 0:16:44.000 --> 0:16:46.600 It was in the three months that I took pat leeve, 0:16:46.640 --> 0:16:48.480 you know, everything was the same. We had the kid 0:16:48.520 --> 0:16:49.160 with the spots. 0:16:49.600 --> 0:16:50.040 That was it. 0:16:50.040 --> 0:16:54.440 It was just the spots. She starts walking, I want 0:16:54.440 --> 0:16:56.720 to say, like eleven or nine and a half, ten months, 0:16:56.720 --> 0:16:59.320 like it was right in there really early, probably because 0:16:59.360 --> 0:17:01.920 she had so many people helping her first born, the 0:17:01.960 --> 0:17:07.120 whole family's around right. There was a period just before 0:17:07.280 --> 0:17:09.600 one year where she reverted to crawling. 0:17:11.840 --> 0:17:16.160 She stopped walking because as far as Ian could tell, 0:17:16.359 --> 0:17:18.760 her hip hurt, she had joint pain. 0:17:18.800 --> 0:17:21.399 As she couldn't walk, something was happening. And that was 0:17:21.640 --> 0:17:25.399 before she was verbal. She can't explain what she's experiencing 0:17:25.480 --> 0:17:27.280 or going on. And she wasn't crying, but she just 0:17:27.359 --> 0:17:31.600 wasn't walking anymore. That was the day the deep feeling 0:17:31.640 --> 0:17:37.000 of failure set in, but turned into a motivation, which 0:17:37.080 --> 0:17:40.679 was it's not good enough for me to not have 0:17:40.720 --> 0:17:42.120 answers anymore. 0:17:43.640 --> 0:17:46.680 More than the hide that motivated him at that point. 0:17:46.800 --> 0:17:50.520 It was like nothing stopping me until I figure this out. 0:17:50.600 --> 0:17:52.840 He was that good have his oatter go through the 0:17:52.880 --> 0:17:53.320 same thing. 0:17:54.560 --> 0:18:03.480 I can't imagine that mix of emotion and ultimately guilt 0:18:03.720 --> 0:18:08.560 and not wanting your daughter to suffer those bouts of 0:18:09.000 --> 0:18:13.760 shame and insecurity and pain that you had to endure. 0:18:15.080 --> 0:18:17.679 I think you hit the nail on the head with guilt. 0:18:18.840 --> 0:18:22.080 It's a feeling like immediately you failed as a parent. 0:18:23.200 --> 0:18:27.400 The second feeling you have is I failed them. They 0:18:27.400 --> 0:18:29.600 don't know it yet, but I failed them because I 0:18:29.600 --> 0:18:33.800 didn't figure this out first. Wow, and that doesn't leave 0:18:33.880 --> 0:18:40.040 you like that. Still to this day, that's one of 0:18:40.080 --> 0:18:48.160 the motivating animating feelings in my life is a perpetual 0:18:48.480 --> 0:18:54.399 fear of continuing to fail your child. At this point, 0:18:54.480 --> 0:18:57.240 I've got a master's in philosophy, which is a research 0:18:57.480 --> 0:19:02.560 master's a law degree. It wasn't until I had ten 0:19:02.760 --> 0:19:06.800 years of post secondary research skills where I had the 0:19:07.359 --> 0:19:10.400 gumption to think that I could contribute to the pursuit 0:19:10.920 --> 0:19:15.640 of finding an answer. My wife worked at the University 0:19:15.640 --> 0:19:18.119 of Toronto at the time, and so we had access 0:19:18.119 --> 0:19:22.119 to the library, and so I spent every evening reading 0:19:22.200 --> 0:19:24.680 medical journals about hives and rashs. 0:19:25.000 --> 0:19:27.600 He was so determined to figure out what it was. 0:19:28.000 --> 0:19:30.760 There were times when we come over and he would 0:19:30.800 --> 0:19:33.199 be on the strangest diet because he wanted to know 0:19:33.280 --> 0:19:37.360 for it was food, and I thought, who could eat 0:19:37.400 --> 0:19:41.639 crawl eggs? Who was doing anything? He read to find 0:19:41.640 --> 0:19:42.560 out what was wrong? 0:19:43.160 --> 0:19:44.800 So you become a medical detective. 0:19:45.119 --> 0:19:47.000 I tried. I couldn't read a medical journal for the 0:19:47.040 --> 0:19:49.600 life of me. The words that we use in science 0:19:49.600 --> 0:19:52.280 are much too large for Ian Stedman. So I was 0:19:52.320 --> 0:19:56.240 reading dermatology papers, looking at pictures. Nothing you know where 0:19:56.280 --> 0:20:01.040 I ended up ended up on Google Search. I searched 0:20:01.840 --> 0:20:05.080 skin rash, and then I scrolled Google Images. This is 0:20:05.160 --> 0:20:07.320 pre AIDA's right, So you can't just take a picture 0:20:07.359 --> 0:20:09.400 of my own skin, throw it on chatchypt and say 0:20:09.480 --> 0:20:09.800 find this. 0:20:10.480 --> 0:20:10.560 No. 0:20:11.240 --> 0:20:14.040 Ian had to scroll, So I scrolled and scrolled and 0:20:14.040 --> 0:20:16.840 scrolled and scrolled. The kid goes to bed at eight o'clock. 0:20:16.960 --> 0:20:18.600 Wife goes to bed at ten o'clock. I set up 0:20:18.640 --> 0:20:22.639 until two o'clock, just scrolling and scrolling and scrolling. I 0:20:22.720 --> 0:20:27.480 found one picture and Google Images that looked like me. 0:20:32.160 --> 0:20:35.919 We'll be right back with Symptomatic, a medical mystery podcast. 0:20:38.960 --> 0:20:45.600 Now back to Symptomatic, a medical mystery podcast. After months 0:20:45.600 --> 0:20:50.280 of scrolling and multiple generations of lived symptoms in his family, 0:20:51.080 --> 0:20:55.800 Ian finds a single paragraph in a sea of millions 0:20:56.200 --> 0:20:59.399 that stops him in his tracks. Take me to that 0:20:59.560 --> 0:21:00.800 exact moment. 0:21:01.359 --> 0:21:04.040 Uh, you know it, it's you know exactly what it is. 0:21:04.119 --> 0:21:06.879 I know my rash. I know what this is. I 0:21:06.920 --> 0:21:09.679 saw it, I clicked it, and then it took me 0:21:09.720 --> 0:21:13.560 to a man's blog who is German? So it was 0:21:13.640 --> 0:21:17.320 written in German, so you quickly learned German. Yeah, I 0:21:17.359 --> 0:21:20.879 have an image, but I have a trail, right, and 0:21:20.920 --> 0:21:23.119 so I could start figuring it out. And so what 0:21:23.160 --> 0:21:26.000 I could read on the page that was English enough 0:21:26.000 --> 0:21:32.120 for me to figure out was three words muckle Wells syndrome. 0:21:32.119 --> 0:21:38.320 In rome. Muckle Wells syndrome, a condition that at the 0:21:38.400 --> 0:21:42.119 time was so rare that it was only cited to 0:21:42.240 --> 0:21:45.040 affect one in one million people. 0:21:45.440 --> 0:21:47.480 That was my next clue. That's the bread crumb. And 0:21:47.520 --> 0:21:50.680 so I started googling muckle Wells and I find out 0:21:50.680 --> 0:21:52.919 there's a couple of different symptoms of muckle Wells. Right, 0:21:52.920 --> 0:21:55.320 there's these red eyes, these chronic red eyes. There's these 0:21:55.480 --> 0:22:00.920 the skin hives. Obviously it's an inflammatory disease, so the arthritis. 0:22:01.240 --> 0:22:04.920 There's headaches. Okay, Now I can go back to those 0:22:04.960 --> 0:22:08.760 medical journals and what's in there about muchle Wells, and 0:22:08.800 --> 0:22:13.119 I find a paper that pieces together my medical history. 0:22:13.600 --> 0:22:17.680 I kind of hoped that he found something, because if 0:22:17.720 --> 0:22:19.639 you have a name for something and you know what 0:22:19.680 --> 0:22:22.560 it is, it's easier to handle it, no matter how 0:22:22.560 --> 0:22:26.960 devastating it is. It's easier because you know what you're 0:22:27.000 --> 0:22:35.000 dealing with. Israel as he described them to me, and 0:22:35.080 --> 0:22:38.760 I'm going, yeah, yep, that too. All of this is together. 0:22:38.880 --> 0:22:42.880 I couldn't believe it. All kinds of things that I 0:22:42.880 --> 0:22:46.040 didn't realize. We're all together, and so wes he said it. 0:22:46.040 --> 0:22:47.200 It suddenly made sense. 0:22:47.880 --> 0:22:51.919 It clicked. The more Ian learned about the prognosis of 0:22:52.000 --> 0:22:55.960 untreated muchael Wells, the more he understood how significant his 0:22:56.080 --> 0:22:57.080 discovery was. 0:22:58.560 --> 0:23:00.760 But one of the things I learned was if you're 0:23:00.760 --> 0:23:06.840 not treated, the protein that causes the inflammation actually causes 0:23:06.920 --> 0:23:13.040 emiloidosis in one third of Mucklewell's patients by the age 0:23:13.040 --> 0:23:17.840 of thirty six, and emiloidosis is kidney failure. It's just 0:23:17.920 --> 0:23:21.000 not waking up because the protein has shut down a 0:23:21.080 --> 0:23:25.680 vital organ. So one in three people untreated with Mucklewlls 0:23:25.720 --> 0:23:28.760 just don't wake up. My mom's over thirty six, so 0:23:28.800 --> 0:23:31.720 she seems to have bucked the trend. I'm running up 0:23:31.720 --> 0:23:33.880 against it, and now I've got a kid, so there's 0:23:33.880 --> 0:23:38.159 three of us. I may have avoided death because my 0:23:38.320 --> 0:23:41.840 daughter was born sick. If it wasn't for Leah being sick, 0:23:42.960 --> 0:23:44.120 I may be the one in three. 0:23:47.040 --> 0:23:51.000 How do you explain or define Mucklewell's syndrome. 0:23:52.320 --> 0:23:55.480 Muckelwell syndrome is part of a group of disorders which 0:23:55.520 --> 0:23:58.760 are genetic in origin, and they're associated with a mutation 0:23:58.960 --> 0:24:04.440