Case #08: August

into any sort of box. I thought my life didn't have any meaning or didn't need to do anything. How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming. What if that enemy was coming from within a disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These

are their stories. I'm Lauren Bright Pacheco, and this is symptomatic august ROACHA has an infectious personality that you immediately pick up on, whether it be talking about musical theater, Squish Mellows or Brandy Carlyle you can just hear the joy in his voice. I love squishmallows. What's a squish mellow? As squish mellow is a type of stuffed animal. I think they're originally made for children, but of course they're

appropriate for people of all ages. They're just very comforting and very soft, and so you can't see, but my my setup here is covered in them, covered in them. August has been through an extremely difficult and trying medical journey, but approaches life with authenticity and openness. That's probably part of why the community he's grown on social media has resonated so deeply with those who share similar journeys. How would you describe August to someone who's not met him.

I would describe him as a wonderfully passionate human being. He just loves to help people. Now he has a community of over a hundred thousand followers on TikTok, and he is going above and beyond to try to share his story and to use that to help educate and trying to change the world for a better place. I know that sounds clich but like it really is what he's doing. That was August's partner, Christine, who has seen

how much of a struggle. Relatively simple, everyday things can be for August because of his medical condition, but the first signs of something being wrong started showing up when he was just five years old, after being left in a basket and an alley in China as a baby, he was adopted by a family in Wisconsin. I categorized my childhood as well sad, but a brilliant beginning because I was given the gift of coming to America. It's a big process, and it changes a person, and it

changes the way that we perceived the world. And so that is how my life started, brand new to a family and brand new to a country. August's brilliant beginning was quickly challenged by the unexplained and painful symptoms he began to develop when he was five years old. While August was raised female, as he grew into adulthood, he came to realize his gender identity was different the sex he was assigned at birth, and eventually transitioned to mail.

That gives August a very unique perspective on his childhood symptoms. I was in such extreme abdominal pain that I didn't know what to do. You've been in so much pain that you're like, wow, I'm I'm screaming, but it's not helping. What can I do? And you know, being a child, you know you don't know what's going on. I mean, you don't know at any age, but my goodness a child.

I was freaking out. And my poor parents they looked at me and they said, well, you know, at the time, she she is probably going through some pre menstrual things age five, I don't know, extreme abdominal pain that couldn't be explained by what he ate or other environmental triggers. August symptoms would only escalate when he hit puberty. My mother there and I were very close at the time, and she was with me when it happened. I was

actually at a dance conference. I was a dancer at the time, and I immediately thought, oh, maybe there was friction in my leotard or in my dance outfit or something, and she said, no, I don't think that's it. We have to go to the doctor now. And so I had skin lesions, sores, and they're not in nice places there in my agenda's So a lot of people were asking questions about are you sexually active? And it was no. I haven't been. I'm a young teenager, you know, I

don't go out, I don't do anything like. I haven't done anything. And even if I had, why are you blaming me? You know? So you were misdiagnosed as having her piece at the age of twelve. Yeah, I was thinking to myself, what did I do? What did I do wrong? August was hit by a variety of complex emotions, confusion, isolation, and even guilt. I don't know if I did process it, to be honest, because everything moved so quickly. It wasn't just oh, here these sores. The doctor thinks it's herpes.

How do you handle this? It was oh, the doctor thinks it's herpes? What did you do? It was immediate, the immediate shift of viewpoints and stigmatization of said symptoms surreal. So how was that treated? It wasn't They gave me light again for the top of it. Eventually, later in further cases of the same symptoms, I would receive prednisone for steroids, just a zapp it. But there was never

any real full solution. It was just a lot of treating symptomatic things that would hopefully, hopefully someday go away, but never really did. With none of the treatments working. A part of August knew this diagnosis could not be correct. But with all the guilt, internal self struggle and stigmatization, August faced the consequences He couldn't rationalize wreak their own

havoc as his symptoms intensified. So the lesions started presenting in your privates, but then they migrated to other areas of your body. At what point did your parents then realize that this isn't what they thought it was? Well, pretty early on, because they realized they had made a mistake. They realized that it wasn't herbies, and they realized that they had gone down the wrong path of thinking. And how did it come back? It came back as pain

crisis And that's what we called them. When I'm in such severe pain and it comes done very quickly, this severe pain, and it'll just knock me out. And it's similar to our understanding of seizures in that you lose all control of your bodily functions, You aren't able to do much, and you start well, not convulsive, but there's such pain that that you can kind of see it zapping through my body. It's weird. It's weird. I don't

know how else to describe it. That it's terrible. And I kept having those and of course they were written off as hysteria. On top of the lesions and sores all over his body, August abdominal pain from his childhood had now progressed into a full blown pain crisis that started to make it impossible for him to sustain a normal life. As the symptoms continued to add up, there seemed to be no true diagnosis in sight for August, just an endless search in the dark for something that

felt beyond elusive. What are some other mis diagnoses that were thrown at you. Let's see ovarian cysts, lots of ovarian and uterine related diagnoses, none of which were correct. At one time, they thought I had crones and klitis, neither of which were true. There was never really like, oh, this one diagnosis covers all of your symptoms. It was like, it's got to be crone's plus another thing, because this

doesn't cover it. An associate professor and rheumatologists at Northwestern dr Anicia Doua knows the struggle of finding a diagnosis all too well. It sounds like you're putting together the pieces of a jigsaw puzzle before you can get a

clear indication of what you're looking at. Yeah, and that along with the fact that all of the puzzles look different, right, so each of these people are coming in not necessarily with the same end picture, and so you're putting it together the pieces, but it's not always going to fit perfectly into any sort of box, and that can lead to frustration and other diagnoses, kind of filling in the

gaps before you can get to that final diagnosis. Still on a long road to the right answers, August was pursuing his dream, training to sing and dance on Broadway, all while the pain crises continued to get worse. They started to spread and cause him to be injured seemingly all the time. The level of the pain increased, and then of course there were swollen joints. I started dislocating things. It was, you know, to the point where the doc was like, well, if you'd just located anymore, we got

to do surgery. And I was a dancer, I was a gymnast. By this time, I'm nineteen, I'm training to be a musical theater professional in New York City, and training in five in shields a day, you know, leotards, which aren't great for general source. And my teachers are like, why do you keep getting injured? What is happening to you?

And we didn't know. We couldn't figure it out. August had dreamt of being on Broadway for such a long time that he tied his identity to it, but it just seemed his body couldn't keep up with his dreams. When you stake your identity in what you do and you lose that ability to do what you think is your life's purpose, it's a deep heartbreak. But also it takes a lot of your pride. It takes a lot of your pride because you're realizing that, oh my gosh, I'm not just my skills? Well who am I? What

does this make me? Now? Am I just a person who is sick? Is that all I am? I just wanted to dance, I just wanted to sing, and I wanted to be happy. And it was a life full of pain and suffering that I didn't under stand. August was then hit with a pain crisis that would change his life, one that would take away some of his dreams but also move him closer to a final diagnosis for what had been ailing him for over fifteen years.

Take me from nineteen year old August, full steam ahead, pursuing dance and performing arts career to one year old August, now bedridden and immobile. That must have been horrific that time period, And just give me an idea of that progression. It was so quick in such a strange way. What happened was I had a pain crisis and I never recovered from it. I ended up falling in the street.

My friends had to move me from you know, cars that we're running in the streets this New York city, so no one cares, you know, you know, and they're pulling me through waving, you know, swerving cars and it's you know, and they call the ambulance and they get me to the hospital. And it's scary from being so close to singing and dancing professionally to now almost a mobile and bedridden. Practically overnight, August life was collapsing all around him, with no clear direction to alter the course

of his symptoms. I was hospitalized when I was twenty one. I had lost all ability to walk without mobility aids, and I was covered in I think it was thirty genital sores at the time. My joints were swollen, and I was just like, it was so hard to move, Lauren, it was so hard to move. I can't imagine how grueling that must have been. So how long were you hospitalized? I was hospitalized for a period of a couple of weeks, maybe a month. The care was lovely from the nurses.

The nurses made the place. Because the doctors told me that I was lying flat out. They sat me down, both of them, with my parents, and they said, we think your daughter is lying so psychosomatic, psychosomatic, psychosomatic, all of it. You're not being able to walk, you're collapsing in the street, your incredible pain, your sores, it's all made up. They said, we'd like to refer you to

our psychology department because this shouldn't be happening. I experience still a lot of medical gas lighting, a lot of people telling me that I was hysterical or that my symptoms were psychosomatic. And I experienced a lot of sexism and racism. But I don't experience as much of that now that I present. His masculine August's understanding nature always came naturally to him. Looking back on a time when his life was so often in the hands of others,

he could rationalize the doctor's limitations. But August faced many dark years of isolation that would challenge his resilience and self fortitude. I was bedridden for a period of almost four years. It was heartbreaking, to say the least. To go from dancing for hours upon hours every day to not being able to get up and go to the bathroom alone is a life shift that I'm not sure

anyone ever thinks still have to face. I lost pretty much all of my friends, and so I basically was living at home with my now ex husband, going to doctor's appointments when I had them, but doing nothing, nothing at all, because I thought my life didn't have any meaning or didn't need to do anything. At this point, when all hopes seemed lost, there came a light at the end of the tunnel for August on his diagnosis journey.

He had finally been referred to a specialist who looked at his symptoms from a different angle, who recognized what he might be suffering from. I was so relieved to have some sort of something, a word, a word, a phrase to hold onto just something. We'll be right back with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast. August Rocha had been suffering from

a mysterious disease since he was five years old. From severe abdominal pain to sores and lesions all over his body. August symptoms never seemed to get better with any of the diagnoses or treatments he received. Desperate for hope, he was finally referred to a rheumatologist who put the puzzle pieces of his symptoms together in a way no one had yet. They said, I think you should see this doctor because you are a Chinese and she specializes in

Chinese medicine. I said, okay, fair enough. And I saw this woman and she looked at my chart and she looked at me, and she says, I know what you have. And she told me I was probably diagnosed at the end of age twenty one with the Chet's disease. It's a rare form of vasculitis that causes inflammation in the blood vessels, which are everywhere except for your eyes, and

you have to have sores. In addition, you have to have sores that are either in your eyes your mouth or your genitals, and you have to have them twice in those three places in a twelvemonth period. I had never heard of it. I had never seen the word. I didn't know how to say it. When you heard that, when you heard that the diagnosis, you heard the shots, what went through your body? What went through your mind? Honestly, Lauren,

I was so relieved. I was so relieved to have some sort of something, a word, a word, a phrase to hold onto, just something. And I said, oh my gosh, that's a I can google that. Right. It was like Christmas in a weird way, because I realized, oh my gosh, this is a path that I can follow, this is something that I can research, this is something I can learn about. But on the opposite side of that token, it was, oh my god, I have a rare illness.

What is that mean. I've heard of them before, and I've heard of, you know, the rare illness community, but I didn't even know. I had no clue, no clue where to start to look for community, to look for people like me, that there were people like me. I mean, I thought I was you know in sci fi movies where they're like, I'm the last alien from this planet. That's how I felt. I felt that way the disease that had been robbing August of his autonomy and quality

of life finally had a name. With a name also came a sense of relief and calm, knowing now what he was up against. Here again is Dr Nisha Da who heads up the Vasculita Center at Northwestern explaining more about the chats. So Bishets is an autoimmune disorder and we consider it as in the category under the umbrella

of the vasculinities. Autoimmune diseases are essentially when your immune system, which should be fighting infections and viruses and all the bad stuff, basically recognize as a part of your own body as a problem and starts attacking it for whatever reason, then eventually causing inflammation and damage to whatever part it is. So Bisht is a variable vessel vasculitis essentially where different sizes of the blood vessels in your body can be inflamed and cause damage. And how difficult is it to

get a proper diagnosis for disease like bischets. It's different things for different people. Different symptoms that start popping up and and they kind of build on each other and eventually, over time, hopefully they get to some sort of diagnosis and recognition of what exactly is going on. But there isn't one specific thing. We don't have one genetic mark or we can check, or one lab test we can check, or one thing we see under the microscope that's going

to give us a clear, definite diagnosis. It's really more of a compilation of different clinical features that we think about to try to piece them together to make the diagnosis. Now, with a proper diagnosis, August not only felt relief in the sense that he knew what illness he suffered from, but also felt a sense of relief letting go of

the self blame. I just needed to know that I wasn't the one who is causing the problems, that it wasn't me, because in my mind all this time it was, oh my gosh, I've been such a burden and I'm thanking my life. You know, I'm taking down everyone with me. But it wasn't true. I hadn't done anything. One thing that is apparent from conversations with August and his partner, Christine is that neither one sees the other as a burden, regardless of medical circumstances. How and when did August share

his health struggles with you? And how difficult was that for him to open up? It was a pretty like natural conversation because early in our relationship he had to flare up, so we just had to talk about it, and so I learned what his symptoms are, how he navigates those, and what he needs. So there's definitely a lot of an educational time time for me to really

understand what's going on. But it was pretty seamless because at the end of the day, you know, I was seeing August in a lot of pain, and as his partner, I want to do what I can to help him. I've never met anyone that cares so deeply for others and cares so deeply about their well being. And you know, that's something so beautiful about our community, our transgender community and also the rare disease community. We have so many loving, caring people who want to make sure that we're okay.

And she's just one of those people. Yeah, a bright light in each other's lives. August and Christine have learned how to best support each other. August still needs assistance from a walker or a wheelchair, to get around easily, and even then still has stabilitating pain crises. Instead of letting it overwhelm him, he's channeled the pain and trauma this experience into activism for the disabled community, the adopted community, the queer community, and of course the rare illness community.

I have to say, you really do radiate positivity and that, particularly in light of the fact that you live with chronic pain. How did you go through the process of

channeling your diagnosis into activism? Mm hmmm. That really started in earnest when I realized that I wasn't alone and that there are people just like me who are waiting for answers, who are waiting to know that they're not, you know, losing it, that they're not the problem, that they're not the reason that their body is betraying them. And I just want people to know that when they see me and they listen to what I have to say,

that they are not alone. That there are so many wonderful people out there who have experienced very similar, heartbreaking things who know that pain and want to comfort you and want to stand in solidarity with you and talk about how okay we can move forward, Okay we can heal these wounds. We can work to give you help and give you healing, and we can work to move towards a future that is brighter. Because that's what I

see for the rare disease community. Because of his openness and genuine joy about life, August has built up over a hundred thousand foll the words on TikTok, who are now all part of a shared community. Even with all the treatments and research being done on autoimmune diseases, Creating this sense of community for patients is exactly the type of thing Dr Dowa says makes an even bigger difference

in their lives. Finding forums where you can kind of talk about your concerns and share that I think is a really empowering thing for patients and and it's really important for them getting better. Honestly, because you can treat all the clinical symptoms, I can give you a bunch of immune suppression, I can give you a bunch of

things to try to make you better. But in terms of like holistic care and actually making someone live their best life, you know, the drugs aren't going to be enough, and so you need some other sorts of support and ways to move forward and cope with some of the stuff that's going to come up, whether or not it's your disease flare or a side effect of the medicine,

or just how you feel. August roch A battled through pain, crises, sores and lesions, overwhelming his body, being told it was all in his head, being shamed for herpes diagnosis, having to give up his dreams of a musical theater career, and being bedridden all to finally have a proper diagnosis, a treatment plan that is helping, and most importantly, a community and partner that supports this stage in his journey

is inspiring. Makes me proud, and it just makes me so happy because August is having an impact on people's lives in a positive way. Like he's kind of like a light in the darkness in a sense as as I to describe, because like with his compassion and with his love of people, he creates a safe space for people to go to feel empowered, to forget a lot of awfulness that's in the world. I say this probably once a day to my girlfriend. Being queer is such

a gift. Being trans is such a gift, And when you combine that with being disabled, you've got a wonderful intersectionality of a human with vast understandings of the world through lived experience, through community, and so there's someone out there who knows what you're going through. Even if you're the most trans, queer, diverse, intersectional person that exists, someone out there sees you and goes a thank you, family, I've found it. I'm not alone. You are never ever alone.

And in terms of advice that you would give someone else who is struggling to find answers and a diagnosis for what they're going through, what advice would you give them, I would give the advice to be as kind to yourself as you can. And that's a lot easier said than done, of course. But my advice then goes for eire to say, make sure that the people around you are really supporting you, because I know that's a huge job to experience all these things and beyond the lookout

for people who aren't caring for you. But if people aren't caring for you, if people do not want to believe you, if people do not want to see that you are truly in pain, you do not need that extra pain in your life. That is extra pain. You know, if you're looking for more information on bishets, you can check out the American Bishet's Disease Association by heading to www dot Bischets dot com. That's b E h c e t s dot com. My name is August Rocha. I am a man who has been battling with this

diagnosis for over sixteen years and counting. But I'm a Bishets warrior, and I'm happy to say it. This is the season from the Alley of Symptomatic, so we just wanted to thank all of our guests for sharing their stories and thank all of you listeners for joining us each week. We'll be back next year to explore more stories of people who have battled unknown illnesses, searching for diagnoses that baffled their doctors. My name is Athena Jeer Bollini.

I'm Naobi Ricks. My name is Kyle Thompson, Camrad Laws. I'm in swan It Monica o'ka. My name is Shelby Zach Dobeck. And when I was eleven years old, I struggled for thirteen years, and I struggled with a medical mystery for almost two decades. For fifteen years, I struggled with disease and for nineteen years I struggled with a disease that was misdiagnosed symptomatic. A Medical Mystery Podcast is an original podcast from I Heart Radio. Are shows hosted

by me Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster. Our producers are Cierra Kaiser and John Irwin. M