WEBVTT - Case #08: August 0:00:04.680 --> 0:00:08.520 You've been in so much pain that you're like, Wow, 0:00:09.160 --> 0:00:13.120 I'm screaming, but it's not helping. What can I do? 0:00:13.400 --> 0:00:16.599 What can I do? There's nothing I can do? And 0:00:16.680 --> 0:00:19.880 sometimes there were some no two am moments where he's 0:00:19.920 --> 0:00:22.600 just having a pan crisis and we needed to get 0:00:22.640 --> 0:00:26.520 him anti pain medication. All the puzzles look different, right, 0:00:26.560 --> 0:00:28.920 So each of these people are coming in not necessarily 0:00:28.920 --> 0:00:31.400 with the same end picture, and so you're putting together 0:00:31.440 --> 0:00:34.239 the pieces, but it's not always going to fit perfectly 0:00:34.240 --> 0:00:37.440 into any sort of box. I thought my life didn't 0:00:37.479 --> 0:00:48.680 have any meaning or didn't need to do anything. How 0:00:48.960 --> 0:00:52.800 terrifying would it be to fight an unknown enemy, one 0:00:52.880 --> 0:00:56.640 you didn't recognize and didn't see coming. What if that 0:00:56.760 --> 0:01:01.160 enemy was coming from within a disease that even doctors 0:01:01.240 --> 0:01:06.520 couldn't identify. Nearly half of all Americans suffer from some 0:01:06.760 --> 0:01:12.600 chronic illness, and many struggle for an accurate diagnosis. These 0:01:12.720 --> 0:01:19.360 are their stories. I'm Lauren Bright Pacheco, and this is 0:01:19.360 --> 0:01:36.800 symptomatic august ROACHA has an infectious personality that you immediately 0:01:36.840 --> 0:01:39.880 pick up on, whether it be talking about musical theater, 0:01:40.280 --> 0:01:44.160 Squish Mellows or Brandy Carlyle you can just hear the 0:01:44.240 --> 0:01:50.360 joy in his voice. I love squishmallows. What's a squish mellow? 0:01:51.720 --> 0:01:55.200 As squish mellow is a type of stuffed animal. I 0:01:55.240 --> 0:01:58.280 think they're originally made for children, but of course they're 0:01:58.320 --> 0:02:01.560 appropriate for people of all ages. They're just very comforting 0:02:01.720 --> 0:02:05.240 and very soft, and so you can't see, but my 0:02:05.240 --> 0:02:09.120 my setup here is covered in them, covered in them. 0:02:09.200 --> 0:02:13.679 August has been through an extremely difficult and trying medical journey, 0:02:13.720 --> 0:02:18.200 but approaches life with authenticity and openness. That's probably part 0:02:18.240 --> 0:02:20.600 of why the community he's grown on social media has 0:02:20.639 --> 0:02:25.280 resonated so deeply with those who share similar journeys. How 0:02:25.280 --> 0:02:30.040 would you describe August to someone who's not met him. 0:02:30.160 --> 0:02:33.400 I would describe him as a wonderfully passionate human being. 0:02:34.880 --> 0:02:39.040 He just loves to help people. Now he has a 0:02:39.080 --> 0:02:41.960 community of over a hundred thousand followers on TikTok, and 0:02:42.240 --> 0:02:48.560 he is going above and beyond to try to share 0:02:48.600 --> 0:02:51.639 his story and to use that to help educate and 0:02:52.440 --> 0:02:53.959 trying to change the world for a better place. I 0:02:53.960 --> 0:02:56.000 know that sounds clich but like it really is what 0:02:56.040 --> 0:02:59.760 he's doing. That was August's partner, Christine, who has seen 0:02:59.800 --> 0:03:02.880 how much of a struggle. Relatively simple, everyday things can 0:03:02.919 --> 0:03:06.160 be for August because of his medical condition, but the 0:03:06.200 --> 0:03:09.320 first signs of something being wrong started showing up when 0:03:09.360 --> 0:03:12.359 he was just five years old, after being left in 0:03:12.400 --> 0:03:14.600 a basket and an alley in China as a baby, 0:03:14.919 --> 0:03:18.880 he was adopted by a family in Wisconsin. I categorized 0:03:18.880 --> 0:03:27.119 my childhood as well sad, but a brilliant beginning because 0:03:28.080 --> 0:03:33.359 I was given the gift of coming to America. It's 0:03:33.400 --> 0:03:36.520 a big process, and it changes a person, and it 0:03:36.640 --> 0:03:39.160 changes the way that we perceived the world. And so 0:03:39.800 --> 0:03:43.120 that is how my life started, brand new to a 0:03:43.200 --> 0:03:47.000 family and brand new to a country. August's brilliant beginning 0:03:47.080 --> 0:03:50.760 was quickly challenged by the unexplained and painful symptoms he 0:03:50.840 --> 0:03:53.960 began to develop when he was five years old. While 0:03:54.000 --> 0:03:57.320 August was raised female, as he grew into adulthood, he 0:03:57.360 --> 0:04:00.520 came to realize his gender identity was different the sex 0:04:00.600 --> 0:04:03.800 he was assigned at birth, and eventually transitioned to mail. 0:04:04.560 --> 0:04:08.600 That gives August a very unique perspective on his childhood symptoms. 0:04:10.120 --> 0:04:15.040 I was in such extreme abdominal pain that I didn't 0:04:15.040 --> 0:04:18.159 know what to do. You've been in so much pain 0:04:18.920 --> 0:04:24.839 that you're like, wow, I'm I'm screaming, but it's not helping. 0:04:25.279 --> 0:04:29.080 What can I do? And you know, being a child, 0:04:30.120 --> 0:04:32.719 you know you don't know what's going on. I mean, 0:04:32.760 --> 0:04:35.200 you don't know at any age, but my goodness a child. 0:04:35.360 --> 0:04:38.960 I was freaking out. And my poor parents they looked 0:04:38.960 --> 0:04:41.200 at me and they said, well, you know, at the time, 0:04:41.320 --> 0:04:45.239 she she is probably going through some pre menstrual things 0:04:45.920 --> 0:04:50.560 age five, I don't know, extreme abdominal pain that couldn't 0:04:50.560 --> 0:04:54.080 be explained by what he ate or other environmental triggers. 0:04:54.440 --> 0:04:59.719 August symptoms would only escalate when he hit puberty. My 0:04:59.800 --> 0:05:02.360 mother there and I were very close at the time, 0:05:02.400 --> 0:05:06.160 and she was with me when it happened. I was 0:05:06.200 --> 0:05:08.960 actually at a dance conference. I was a dancer at 0:05:08.960 --> 0:05:12.960 the time, and I immediately thought, oh, maybe there was 0:05:13.200 --> 0:05:16.480 friction in my leotard or in my dance outfit or something, 0:05:17.240 --> 0:05:20.240 and she said, no, I don't think that's it. We 0:05:20.320 --> 0:05:23.880 have to go to the doctor now. And so I 0:05:24.000 --> 0:05:28.880 had skin lesions, sores, and they're not in nice places 0:05:28.920 --> 0:05:32.880 there in my agenda's So a lot of people were 0:05:32.920 --> 0:05:36.520 asking questions about are you sexually active? And it was no. 0:05:36.960 --> 0:05:41.240 I haven't been. I'm a young teenager, you know, I 0:05:41.680 --> 0:05:44.039 don't go out, I don't do anything like. I haven't 0:05:44.080 --> 0:05:47.120 done anything. And even if I had, why are you 0:05:47.200 --> 0:05:51.080 blaming me? You know? So you were misdiagnosed as having 0:05:51.080 --> 0:05:54.599 her piece at the age of twelve. Yeah, I was 0:05:54.640 --> 0:05:57.160 thinking to myself, what did I do? What did I 0:05:57.200 --> 0:06:06.040 do wrong? August was hit by a variety of complex emotions, confusion, isolation, 0:06:06.560 --> 0:06:10.000 and even guilt. I don't know if I did process it, 0:06:10.040 --> 0:06:15.559 to be honest, because everything moved so quickly. It wasn't 0:06:15.720 --> 0:06:20.440 just oh, here these sores. The doctor thinks it's herpes. 0:06:21.440 --> 0:06:23.800 How do you handle this? It was oh, the doctor 0:06:23.880 --> 0:06:28.120 thinks it's herpes? What did you do? It was immediate, 0:06:28.560 --> 0:06:34.880 the immediate shift of viewpoints and stigmatization of said symptoms surreal. 0:06:35.880 --> 0:06:40.919 So how was that treated? It wasn't They gave me 0:06:41.040 --> 0:06:45.560 light again for the top of it. Eventually, later in 0:06:46.240 --> 0:06:50.599 further cases of the same symptoms, I would receive prednisone 0:06:50.760 --> 0:06:54.440 for steroids, just a zapp it. But there was never 0:06:54.480 --> 0:06:57.560 any real full solution. It was just a lot of 0:06:57.800 --> 0:07:02.680 treating symptomatic things that would hopefully, hopefully someday go away, 0:07:02.880 --> 0:07:06.120 but never really did. With none of the treatments working. 0:07:06.279 --> 0:07:09.280 A part of August knew this diagnosis could not be correct. 0:07:09.640 --> 0:07:12.960 But with all the guilt, internal self struggle and stigmatization, 0:07:13.040 --> 0:07:17.440 August faced the consequences He couldn't rationalize wreak their own 0:07:17.520 --> 0:07:24.280 havoc as his symptoms intensified. So the lesions started presenting 0:07:24.480 --> 0:07:28.600 in your privates, but then they migrated to other areas 0:07:28.640 --> 0:07:32.520 of your body. At what point did your parents then 0:07:32.600 --> 0:07:36.880 realize that this isn't what they thought it was? Well, 0:07:37.920 --> 0:07:41.440 pretty early on, because they realized they had made a mistake. 0:07:41.920 --> 0:07:45.680 They realized that it wasn't herbies, and they realized that 0:07:45.840 --> 0:07:49.280 they had gone down the wrong path of thinking. And 0:07:49.320 --> 0:07:54.920 how did it come back? It came back as pain 0:07:55.040 --> 0:07:58.280 crisis And that's what we called them. When I'm in 0:07:58.320 --> 0:08:01.400 such severe pain and it comes done very quickly, this 0:08:01.560 --> 0:08:05.920 severe pain, and it'll just knock me out. And it's 0:08:06.560 --> 0:08:10.520 similar to our understanding of seizures in that you lose 0:08:10.960 --> 0:08:13.760 all control of your bodily functions, You aren't able to 0:08:13.800 --> 0:08:17.280 do much, and you start well, not convulsive, but there's 0:08:17.320 --> 0:08:20.000 such pain that that you can kind of see it 0:08:20.200 --> 0:08:23.559 zapping through my body. It's weird. It's weird. I don't 0:08:23.600 --> 0:08:27.000 know how else to describe it. That it's terrible. And 0:08:28.000 --> 0:08:30.840 I kept having those and of course they were written 0:08:30.880 --> 0:08:34.400 off as hysteria. On top of the lesions and sores 0:08:34.440 --> 0:08:38.160 all over his body, August abdominal pain from his childhood 0:08:38.400 --> 0:08:42.160 had now progressed into a full blown pain crisis that 0:08:42.320 --> 0:08:45.440 started to make it impossible for him to sustain a 0:08:45.559 --> 0:08:49.079 normal life. As the symptoms continued to add up, there 0:08:49.120 --> 0:08:52.080 seemed to be no true diagnosis in sight for August, 0:08:52.679 --> 0:08:55.440 just an endless search in the dark for something that 0:08:55.559 --> 0:09:00.920 felt beyond elusive. What are some other mis diagnoses that 0:09:00.960 --> 0:09:06.960 were thrown at you. Let's see ovarian cysts, lots of 0:09:06.960 --> 0:09:12.800 ovarian and uterine related diagnoses, none of which were correct. 0:09:13.720 --> 0:09:16.920 At one time, they thought I had crones and klitis, 0:09:17.640 --> 0:09:22.960 neither of which were true. There was never really like, oh, 0:09:23.080 --> 0:09:27.959 this one diagnosis covers all of your symptoms. It was like, 0:09:28.200 --> 0:09:31.600 it's got to be crone's plus another thing, because this 0:09:31.679 --> 0:09:36.120 doesn't cover it. An associate professor and rheumatologists at Northwestern 0:09:36.559 --> 0:09:40.200 dr Anicia Doua knows the struggle of finding a diagnosis 0:09:40.320 --> 0:09:44.600 all too well. It sounds like you're putting together the 0:09:44.600 --> 0:09:47.040 pieces of a jigsaw puzzle before you can get a 0:09:47.040 --> 0:09:50.640 clear indication of what you're looking at. Yeah, and that 0:09:50.760 --> 0:09:53.000 along with the fact that all of the puzzles look different, right, 0:09:53.040 --> 0:09:55.400 so each of these people are coming in not necessarily 0:09:55.400 --> 0:09:57.559 with the same end picture, and so you're putting it 0:09:57.559 --> 0:10:00.199 together the pieces, but it's not always going to fit 0:10:00.240 --> 0:10:03.040 perfectly into any sort of box, and that can lead 0:10:03.040 --> 0:10:07.199 to frustration and other diagnoses, kind of filling in the 0:10:07.559 --> 0:10:13.280 gaps before you can get to that final diagnosis. Still 0:10:13.280 --> 0:10:15.920 on a long road to the right answers, August was 0:10:15.960 --> 0:10:19.960 pursuing his dream, training to sing and dance on Broadway, 0:10:20.360 --> 0:10:23.640 all while the pain crises continued to get worse. They 0:10:23.640 --> 0:10:26.840 started to spread and cause him to be injured seemingly 0:10:26.960 --> 0:10:30.280 all the time. The level of the pain increased, and 0:10:30.320 --> 0:10:34.360 then of course there were swollen joints. I started dislocating things. 0:10:35.080 --> 0:10:38.280 It was, you know, to the point where the doc 0:10:38.480 --> 0:10:40.760 was like, well, if you'd just located anymore, we got 0:10:40.760 --> 0:10:43.680 to do surgery. And I was a dancer, I was 0:10:43.720 --> 0:10:47.840 a gymnast. By this time, I'm nineteen, I'm training to 0:10:47.960 --> 0:10:50.720 be a musical theater professional in New York City, and 0:10:51.440 --> 0:10:54.479 training in five in shields a day, you know, leotards, 0:10:54.480 --> 0:10:59.880 which aren't great for general source. And my teachers are like, 0:11:00.120 --> 0:11:03.679 why do you keep getting injured? What is happening to you? 0:11:04.960 --> 0:11:08.600 And we didn't know. We couldn't figure it out. August 0:11:08.640 --> 0:11:11.200 had dreamt of being on Broadway for such a long 0:11:11.280 --> 0:11:14.280 time that he tied his identity to it, but it 0:11:14.400 --> 0:11:17.120 just seemed his body couldn't keep up with his dreams. 0:11:17.760 --> 0:11:22.400 When you stake your identity in what you do and 0:11:22.480 --> 0:11:27.280 you lose that ability to do what you think is 0:11:27.320 --> 0:11:32.920 your life's purpose, it's a deep heartbreak. But also it 0:11:33.000 --> 0:11:37.360 takes a lot of your pride. It takes a lot 0:11:37.400 --> 0:11:41.120 of your pride because you're realizing that, oh my gosh, 0:11:41.200 --> 0:11:44.320 I'm not just my skills? Well who am I? What 0:11:44.400 --> 0:11:46.920 does this make me? Now? Am I just a person 0:11:46.960 --> 0:11:50.040 who is sick? Is that all I am? I just 0:11:50.120 --> 0:11:52.760 wanted to dance, I just wanted to sing, and I 0:11:52.760 --> 0:11:57.400 wanted to be happy. And it was a life full 0:11:57.440 --> 0:12:02.200 of pain and suffering that I didn't under stand. August 0:12:02.320 --> 0:12:04.760 was then hit with a pain crisis that would change 0:12:04.760 --> 0:12:07.400 his life, one that would take away some of his 0:12:07.520 --> 0:12:11.400 dreams but also move him closer to a final diagnosis 0:12:11.440 --> 0:12:14.320 for what had been ailing him for over fifteen years. 0:12:15.480 --> 0:12:20.199 Take me from nineteen year old August, full steam ahead, 0:12:20.360 --> 0:12:27.360 pursuing dance and performing arts career to one year old August, 0:12:28.000 --> 0:12:36.600 now bedridden and immobile. That must have been horrific that 0:12:37.480 --> 0:12:42.000 time period, And just give me an idea of that progression. 0:12:43.800 --> 0:12:50.520 It was so quick in such a strange way. What 0:12:50.679 --> 0:12:57.160 happened was I had a pain crisis and I never 0:12:57.200 --> 0:13:03.000 recovered from it. I ended up falling in the street. 0:13:04.559 --> 0:13:08.400 My friends had to move me from you know, cars 0:13:09.080 --> 0:13:11.440 that we're running in the streets this New York city, 0:13:11.520 --> 0:13:15.079 so no one cares, you know, you know, and they're 0:13:15.120 --> 0:13:18.480 pulling me through waving, you know, swerving cars and it's 0:13:18.600 --> 0:13:21.120 you know, and they call the ambulance and they get 0:13:21.160 --> 0:13:27.800 me to the hospital. And it's scary from being so 0:13:27.880 --> 0:13:31.760 close to singing and dancing professionally to now almost a 0:13:31.880 --> 0:13:36.560 mobile and bedridden. Practically overnight, August life was collapsing all 0:13:36.600 --> 0:13:39.560 around him, with no clear direction to alter the course 0:13:39.679 --> 0:13:44.439 of his symptoms. I was hospitalized when I was twenty one. 0:13:45.480 --> 0:13:50.560 I had lost all ability to walk without mobility aids, 0:13:51.400 --> 0:13:56.280 and I was covered in I think it was thirty 0:13:56.320 --> 0:14:00.280 genital sores at the time. My joints were swollen, and 0:14:00.360 --> 0:14:04.320 I was just like, it was so hard to move, Lauren, 0:14:04.880 --> 0:14:08.240 it was so hard to move. I can't imagine how 0:14:08.640 --> 0:14:13.960 grueling that must have been. So how long were you hospitalized? 0:14:14.440 --> 0:14:18.760 I was hospitalized for a period of a couple of weeks, 0:14:19.040 --> 0:14:25.440 maybe a month. The care was lovely from the nurses. 0:14:25.560 --> 0:14:30.040 The nurses made the place. Because the doctors told me 0:14:30.120 --> 0:14:32.720 that I was lying flat out. They sat me down, 0:14:32.880 --> 0:14:35.000 both of them, with my parents, and they said, we 0:14:35.040 --> 0:14:41.480 think your daughter is lying so psychosomatic, psychosomatic, psychosomatic, all 0:14:41.560 --> 0:14:45.520 of it. You're not being able to walk, you're collapsing 0:14:45.560 --> 0:14:50.040 in the street, your incredible pain, your sores, it's all 0:14:50.240 --> 0:14:53.400 made up. They said, we'd like to refer you to 0:14:53.480 --> 0:14:59.920 our psychology department because this shouldn't be happening. I experience 0:15:00.000 --> 0:15:02.840 still a lot of medical gas lighting, a lot of 0:15:02.920 --> 0:15:05.600 people telling me that I was hysterical or that my 0:15:05.760 --> 0:15:10.080 symptoms were psychosomatic. And I experienced a lot of sexism 0:15:10.280 --> 0:15:14.880 and racism. But I don't experience as much of that 0:15:15.040 --> 0:15:20.120 now that I present. His masculine August's understanding nature always 0:15:20.200 --> 0:15:23.080 came naturally to him. Looking back on a time when 0:15:23.160 --> 0:15:24.920 his life was so often in the hands of others, 0:15:25.360 --> 0:15:29.560 he could rationalize the doctor's limitations. But August faced many 0:15:29.720 --> 0:15:33.080 dark years of isolation that would challenge his resilience and 0:15:33.200 --> 0:15:36.560 self fortitude. I was bedridden for a period of almost 0:15:36.680 --> 0:15:43.560 four years. It was heartbreaking, to say the least. To 0:15:43.680 --> 0:15:48.160 go from dancing for hours upon hours every day to 0:15:49.200 --> 0:15:51.200 not being able to get up and go to the 0:15:51.240 --> 0:15:56.320 bathroom alone is a life shift that I'm not sure 0:15:56.400 --> 0:16:03.880 anyone ever thinks still have to face. I lost pretty 0:16:04.000 --> 0:16:09.960 much all of my friends, and so I basically was 0:16:10.440 --> 0:16:13.960 living at home with my now ex husband, going to 0:16:14.080 --> 0:16:17.200 doctor's appointments when I had them, but doing nothing, nothing 0:16:17.240 --> 0:16:19.400 at all, because I thought my life didn't have any 0:16:19.520 --> 0:16:22.640 meaning or didn't need to do anything. At this point, 0:16:22.960 --> 0:16:26.040 when all hopes seemed lost, there came a light at 0:16:26.080 --> 0:16:28.760 the end of the tunnel for August on his diagnosis journey. 0:16:29.320 --> 0:16:32.440 He had finally been referred to a specialist who looked 0:16:32.480 --> 0:16:35.400 at his symptoms from a different angle, who recognized what 0:16:35.520 --> 0:16:38.600 he might be suffering from. I was so relieved to 0:16:38.720 --> 0:16:43.520 have some sort of something, a word, a word, a 0:16:43.600 --> 0:16:50.120 phrase to hold onto just something. We'll be right back 0:16:50.200 --> 0:16:59.040 with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic, 0:16:59.400 --> 0:17:05.719 a Medical Mystery Podcast. August Rocha had been suffering from 0:17:05.760 --> 0:17:08.920 a mysterious disease since he was five years old. From 0:17:09.000 --> 0:17:12.440 severe abdominal pain to sores and lesions all over his body. 0:17:12.920 --> 0:17:15.840 August symptoms never seemed to get better with any of 0:17:15.920 --> 0:17:19.960 the diagnoses or treatments he received. Desperate for hope, he 0:17:20.119 --> 0:17:23.200 was finally referred to a rheumatologist who put the puzzle 0:17:23.280 --> 0:17:25.919 pieces of his symptoms together in a way no one 0:17:26.040 --> 0:17:29.639 had yet. They said, I think you should see this 0:17:29.760 --> 0:17:32.440 doctor because you are a Chinese and she specializes in 0:17:32.560 --> 0:17:37.440 Chinese medicine. I said, okay, fair enough. And I saw 0:17:37.520 --> 0:17:41.159 this woman and she looked at my chart and she 0:17:41.280 --> 0:17:43.040 looked at me, and she says, I know what you have. 0:17:43.240 --> 0:17:50.040 And she told me I was probably diagnosed at the 0:17:50.960 --> 0:17:59.800 end of age twenty one with the Chet's disease. It's 0:18:00.520 --> 0:18:04.359 a rare form of vasculitis that causes inflammation in the 0:18:04.400 --> 0:18:08.359 blood vessels, which are everywhere except for your eyes, and 0:18:08.640 --> 0:18:11.800 you have to have sores. In addition, you have to 0:18:11.880 --> 0:18:14.880 have sores that are either in your eyes your mouth 0:18:15.040 --> 0:18:17.600 or your genitals, and you have to have them twice 0:18:18.600 --> 0:18:24.480 in those three places in a twelvemonth period. I had 0:18:24.560 --> 0:18:27.080 never heard of it. I had never seen the word. 0:18:27.320 --> 0:18:30.680 I didn't know how to say it. When you heard that, 0:18:30.880 --> 0:18:35.720 when you heard that the diagnosis, you heard the shots, 0:18:37.119 --> 0:18:41.760 what went through your body? What went through your mind? Honestly, Lauren, 0:18:41.880 --> 0:18:45.240 I was so relieved. I was so relieved to have 0:18:45.640 --> 0:18:50.439 some sort of something, a word, a word, a phrase 0:18:50.560 --> 0:18:55.399 to hold onto, just something. And I said, oh my gosh, 0:18:55.840 --> 0:18:58.879 that's a I can google that. Right. It was like 0:18:59.200 --> 0:19:02.560 Christmas in a weird way, because I realized, oh my gosh, 0:19:03.080 --> 0:19:05.800 this is a path that I can follow, this is 0:19:05.880 --> 0:19:07.879 something that I can research, this is something I can 0:19:07.960 --> 0:19:11.240 learn about. But on the opposite side of that token, 0:19:11.320 --> 0:19:14.280 it was, oh my god, I have a rare illness. 0:19:14.480 --> 0:19:17.680 What is that mean. I've heard of them before, and 0:19:17.760 --> 0:19:20.000 I've heard of, you know, the rare illness community, but 0:19:20.119 --> 0:19:23.960 I didn't even know. I had no clue, no clue 0:19:24.160 --> 0:19:26.680 where to start to look for community, to look for 0:19:26.840 --> 0:19:30.600 people like me, that there were people like me. I mean, 0:19:31.000 --> 0:19:33.760 I thought I was you know in sci fi movies 0:19:33.800 --> 0:19:36.560 where they're like, I'm the last alien from this planet. 0:19:36.880 --> 0:19:40.200 That's how I felt. I felt that way the disease 0:19:40.280 --> 0:19:43.320 that had been robbing August of his autonomy and quality 0:19:43.359 --> 0:19:46.600 of life finally had a name. With a name also 0:19:46.720 --> 0:19:49.399 came a sense of relief and calm, knowing now what 0:19:49.560 --> 0:19:53.880 he was up against. Here again is Dr Nisha Da 0:19:54.000 --> 0:19:57.880 who heads up the Vasculita Center at Northwestern explaining more 0:19:58.040 --> 0:20:03.280 about the chats. So Bishets is an autoimmune disorder and 0:20:03.600 --> 0:20:06.840 we consider it as in the category under the umbrella 0:20:06.960 --> 0:20:11.280 of the vasculinities. Autoimmune diseases are essentially when your immune system, 0:20:11.280 --> 0:20:14.480 which should be fighting infections and viruses and all the 0:20:14.520 --> 0:20:17.160 bad stuff, basically recognize as a part of your own 0:20:17.200 --> 0:20:20.520 body as a problem and starts attacking it for whatever reason, 0:20:20.920 --> 0:20:24.240 then eventually causing inflammation and damage to whatever part it is. 0:20:24.760 --> 0:20:29.359 So Bisht is a variable vessel vasculitis essentially where different 0:20:29.400 --> 0:20:31.520 sizes of the blood vessels in your body can be 0:20:31.800 --> 0:20:36.040 inflamed and cause damage. And how difficult is it to 0:20:36.119 --> 0:20:40.720 get a proper diagnosis for disease like bischets. It's different 0:20:40.760 --> 0:20:44.280 things for different people. Different symptoms that start popping up 0:20:44.320 --> 0:20:46.800 and and they kind of build on each other and eventually, 0:20:46.880 --> 0:20:49.359 over time, hopefully they get to some sort of diagnosis 0:20:49.440 --> 0:20:52.280 and recognition of what exactly is going on. But there 0:20:52.440 --> 0:20:56.240 isn't one specific thing. We don't have one genetic mark 0:20:56.280 --> 0:20:58.200 or we can check, or one lab test we can check, 0:20:58.280 --> 0:21:00.720 or one thing we see under the microscope that's going 0:21:00.760 --> 0:21:04.320 to give us a clear, definite diagnosis. It's really more 0:21:04.359 --> 0:21:07.440 of a compilation of different clinical features that we think 0:21:07.440 --> 0:21:11.840 about to try to piece them together to make the diagnosis. Now, 0:21:11.960 --> 0:21:15.200 with a proper diagnosis, August not only felt relief in 0:21:15.280 --> 0:21:17.640 the sense that he knew what illness he suffered from, 0:21:18.119 --> 0:21:20.560 but also felt a sense of relief letting go of 0:21:20.680 --> 0:21:24.879 the self blame. I just needed to know that I 0:21:25.160 --> 0:21:28.920 wasn't the one who is causing the problems, that it 0:21:29.080 --> 0:21:32.720 wasn't me, because in my mind all this time it was, 0:21:33.240 --> 0:21:36.400 oh my gosh, I've been such a burden and I'm 0:21:36.640 --> 0:21:39.720 thanking my life. You know, I'm taking down everyone with me. 0:21:39.840 --> 0:21:43.639 But it wasn't true. I hadn't done anything. One thing 0:21:43.760 --> 0:21:46.680 that is apparent from conversations with August and his partner, 0:21:46.800 --> 0:21:50.080 Christine is that neither one sees the other as a burden, 0:21:50.400 --> 0:21:57.439 regardless of medical circumstances. How and when did August share 0:21:58.320 --> 0:22:03.600 his health struggles with you? And how difficult was that 0:22:04.000 --> 0:22:07.320 for him to open up? It was a pretty like 0:22:07.520 --> 0:22:12.440 natural conversation because early in our relationship he had to 0:22:12.520 --> 0:22:15.320 flare up, so we just had to talk about it, 0:22:15.320 --> 0:22:18.240 and so I learned what his symptoms are, how he 0:22:18.400 --> 0:22:22.240 navigates those, and what he needs. So there's definitely a 0:22:22.240 --> 0:22:25.360 lot of an educational time time for me to really 0:22:25.440 --> 0:22:28.080 understand what's going on. But it was pretty seamless because 0:22:28.359 --> 0:22:29.560 at the end of the day, you know, I was 0:22:29.600 --> 0:22:34.040 seeing August in a lot of pain, and as his partner, 0:22:34.080 --> 0:22:36.119 I want to do what I can to help him. 0:22:36.880 --> 0:22:39.840 I've never met anyone that cares so deeply for others 0:22:40.440 --> 0:22:43.920 and cares so deeply about their well being. And you know, 0:22:44.040 --> 0:22:48.880 that's something so beautiful about our community, our transgender community 0:22:48.960 --> 0:22:53.240 and also the rare disease community. We have so many loving, 0:22:53.440 --> 0:22:57.480 caring people who want to make sure that we're okay. 0:22:58.160 --> 0:23:01.280 And she's just one of those people. Yeah, a bright 0:23:01.400 --> 0:23:04.000 light in each other's lives. August and Christine have learned 0:23:04.080 --> 0:23:07.320 how to best support each other. August still needs assistance 0:23:07.400 --> 0:23:09.919 from a walker or a wheelchair, to get around easily, 0:23:10.320 --> 0:23:14.119 and even then still has stabilitating pain crises. Instead of 0:23:14.240 --> 0:23:17.280 letting it overwhelm him, he's channeled the pain and trauma 0:23:17.400 --> 0:23:22.280 this experience into activism for the disabled community, the adopted community, 0:23:22.640 --> 0:23:26.320 the queer community, and of course the rare illness community. 0:23:27.440 --> 0:23:33.960 I have to say, you really do radiate positivity and that, 0:23:34.680 --> 0:23:37.960 particularly in light of the fact that you live with 0:23:39.160 --> 0:23:44.240 chronic pain. How did you go through the process of 0:23:44.560 --> 0:23:51.040 channeling your diagnosis into activism? Mm hmmm. That really started 0:23:51.680 --> 0:23:56.840 in earnest when I realized that I wasn't alone and 0:23:57.040 --> 0:24:02.960 that there are people just like me who are waiting 0:24:03.280 --> 0:24:06.600 for answers, who are waiting to know that they're not, 0:24:07.520 --> 0:24:11.159 you know, losing it, that they're not the problem, that 0:24:12.160 --> 0:24:14.880 they're not the reason that their body is betraying them. 0:24:15.760 --> 0:24:19.840 And I just want people to know that when they 0:24:19.960 --> 0:24:22.280 see me and they listen to what I have to say, 0:24:22.400 --> 0:24:25.680 that they are not alone. That there are so many 0:24:25.760 --> 0:24:29.640 wonderful people out there who have experienced very similar, heartbreaking 0:24:29.760 --> 0:24:33.480 things who know that pain and want to comfort you 0:24:34.000 --> 0:24:36.640 and want to stand in solidarity with you and talk 0:24:36.720 --> 0:24:41.119 about how okay we can move forward, Okay we can 0:24:41.240 --> 0:24:44.000 heal these wounds. We can work to give you help 0:24:44.160 --> 0:24:47.080 and give you healing, and we can work to move 0:24:47.320 --> 0:24:51.520 towards a future that is brighter. Because that's what I 0:24:51.600 --> 0:24:55.240 see for the rare disease community. Because of his openness 0:24:55.359 --> 0:24:58.560 and genuine joy about life, August has built up over 0:24:58.640 --> 0:25:01.479 a hundred thousand foll the words on TikTok, who are 0:25:01.520 --> 0:25:04.280 now all part of a shared community. Even with all 0:25:04.320 --> 0:25:08.280 the treatments and research being done on autoimmune diseases, Creating 0:25:08.520 --> 0:25:11.359 this sense of community for patients is exactly the type 0:25:11.400 --> 0:25:14.920 of thing Dr Dowa says makes an even bigger difference 0:25:15.040 --> 0:25:17.840 in their lives. Finding forums where you can kind of 0:25:17.880 --> 0:25:20.000 talk about your concerns and share that I think is 0:25:20.040 --> 0:25:22.720 a really empowering thing for patients and and it's really 0:25:22.760 --> 0:25:25.520 important for them getting better. Honestly, because you can treat 0:25:25.560 --> 0:25:28.080 all the clinical symptoms, I can give you a bunch 0:25:28.080 --> 0:25:29.680 of immune suppression, I can give you a bunch of 0:25:29.760 --> 0:25:31.680 things to try to make you better. But in terms 0:25:31.720 --> 0:25:34.960 of like holistic care and actually making someone live their 0:25:35.000 --> 0:25:38.320 best life, you know, the drugs aren't going to be enough, 0:25:38.520 --> 0:25:40.760 and so you need some other sorts of support and 0:25:40.840 --> 0:25:42.680 ways to move forward and cope with some of the 0:25:42.720 --> 0:25:44.880 stuff that's going to come up, whether or not it's 0:25:44.880 --> 0:25:46.880 your disease flare or a side effect of the medicine, 0:25:47.000 --> 0:25:54.560 or just how you feel. August roch A battled through pain, crises, 0:25:55.080 --> 0:25:58.639 sores and lesions, overwhelming his body, being told it was 0:25:58.720 --> 0:26:03.000 all in his head, being shamed for herpes diagnosis, having 0:26:03.080 --> 0:26:05.639 to give up his dreams of a musical theater career, 0:26:06.000 --> 0:26:10.120 and being bedridden all to finally have a proper diagnosis, 0:26:10.600 --> 0:26:13.639 a treatment plan that is helping, and most importantly, a 0:26:13.760 --> 0:26:17.280 community and partner that supports this stage in his journey 0:26:18.200 --> 0:26:21.240 is inspiring. Makes me proud, and it just makes me 0:26:21.480 --> 0:26:27.760 so happy because August is having an impact on people's 0:26:27.840 --> 0:26:30.800 lives in a positive way. Like he's kind of like 0:26:30.880 --> 0:26:33.040 a light in the darkness in a sense as as 0:26:33.080 --> 0:26:35.920 I to describe, because like with his compassion and with 0:26:36.160 --> 0:26:40.800 his love of people, he creates a safe space for 0:26:40.920 --> 0:26:45.600 people to go to feel empowered, to forget a lot 0:26:45.640 --> 0:26:49.840 of awfulness that's in the world. I say this probably 0:26:49.960 --> 0:26:53.800 once a day to my girlfriend. Being queer is such 0:26:53.840 --> 0:26:57.760 a gift. Being trans is such a gift, And when 0:26:57.840 --> 0:27:02.600 you combine that with being disabled, you've got a wonderful 0:27:02.640 --> 0:27:07.399