Coming up on the FSR Sarkvider podcast, the youngest Sarkatos' patient yet to join me on the podcast. Yeah, so I was diagnosed when I was 12 in 2019, and I'm 18 now, so I had it for six going on seven years. Scarlett joins me from Ohio State, where she is a freshman just starting her college career, and also joining me is her mother Kelly, who was tasked with raising an active twin and teen, living with Sarkviderosis. All of this, I knew in my mind that in my heart that there was something just not right with my daughter. She was getting these really odd fevers where she would get 104.7 fevers for 12 hours, and then they would go away, and then it'd be like nothing, you know, like she was normal back to normal again. And this would happen, and she would have these about two or three a month. This is the Sarkvider podcast, living with Sarkviderosis and other rare diseases. Here's your host, John Carlin. Hi, this is episode 145 of the FSR Sarkvider podcast. I'm your host, John Carlin, the date of this recording August 24th, 2025. If there was ever evidence of hope in a battle with Sark, it is Scarlet's story. She was diagnosed so young, and though there were numerous setbacks in her life, she really managed to excel. And so you're going to hear the interview today. She is literally in her first week at college. It's a Zoom interview, but you can see in the background a very collegiate looking room, which is adorable. And she is just getting started with her college career. And the thing about Scarlet is she's very, very smart. She's wise beyond her years, if you will. She talked about in the interview that she wants to do pre-med, and apparently has the grades to suggest that she can do that, which, you know, not I could have said I wanted to do pre-med, but you know, I was just one organic chemistry course short of knowing that there was no way that was ever going to happen, right? But she wants to do it. Her mom says she can do it, and Scarlet has such a bright personality. I can't wait for you to hear from her. And then her mother talk about worry. She had to get through this difficult sarcoidosis landscape showing up with a daughter, and there are places where they said, well, we can't treat somebody that young with sarcoidosis. Like, we don't know how. So you've got to find the doctor that understands sarcoidosis, and then finding somebody that can treat it in a young girl. And her mother is, of course, when it first presented, they didn't know what it was, and they're going to talk about that a little bit in the interview. So they faced all kinds of setbacks, and yet Scarlet is going strong, and she really is, and she's got her life in front of her, and she's going to go out and get it, and I just think you're going to be very, very impressed with her. More hope on the horizon. Sarcoidosis news is reporting on a new study on Acure Sarcoidosis. I'll just hit some of the high points there. This is the, I want to get it to you correctly. This is by Patricia and they show PhD, and the title of this article was tailored progressive treatment urged for acure sarcoidosis, and they are saying that glucocorticoids should be the first option, then followed by immunosuppressants when it comes to acure sarcoidosis. And I'm just kind of scanning the article here. The treatment of people with acure sarcoidosis should be tailored based upon symptom severity, starting with glucocorticoids. If patients do not respond adequately, then immunosuppressants can be added, followed by biologic therapies of necessary, which a lot of that sounds like what they would do for anybody, with sarcoidosis anywhere in their body. But the results of this study, which was done in Spain, the prevalence of this is interesting. The prevalence of acure sarcoidosis when sarcoidosis affects the eyes varies by country, and I'm reading this verbatim, varies by country ranging from 4.5% of the people in Finland up to 50% in Japan. So they're saying here that half the people walking around in Japan have some sort of sarcoidosis in their eyes. One of the most common manifestations of acure sarcoidosis is uvidis or inflammation of the uvia, which is the middle layer of the eyes outer wall that supplies blood to the retina. And it says treatments for acure sarcoidosis mainly include agents with anti-inflammatory and immunosuppressive effects. Glucocorticoids are the mainstay treatment, but they can have serious side effects, and some patients may not respond to them. In such cases, conventional immunosuppressants are often required, and these are the drugs that you probably are familiar with here in the sarcoidosis space, and they list methotrexates, azothiaprine, which I take, and cyclosporine, and many people who've been on the show talked about cyclosporine. And then they say, then after that, biologic therapies are typically the next therapeutic step, the most commonly used being tumor necrosis factor inhibitors, TNFs, and examples of TNFs used in acure sarcoidosis include infleximab, which is remochaed, and there are biosimilers available, which are biosimilers or drugs that are very, very close, but not exactly the same. And then also adolimumab, there you go. It wouldn't roll off my tongue. Adolimumab sold as Humera and also with biosimilers, and I have personally taken remochaed, which I received as an IV treatment, and Humera, which comes with a injector pen, as an injector pen, and then there are also biosimilers, and my insurance company has now pushed me to a less expensive version of Humera with a biosimiler. But anyway, so this study looked at all the different ways, and I'll put a link to it, that patients who have acure sarcoidosis, where it normally happens, and the best treatments, and so forth, and so on. And I think the takeaway here is that they're looking at each patient individually, and then seeing where they need to go next. I will post a link, and you can read about that, because there is a pretty big percentage of people in the United States walking around with acure sarcoidosis. So personally, I just want to let you know, I am headed to the Cleveland Clinic soon for my annual checkup, about a month from now, as I'm speaking today. I'm not sure what it's going to show. I've been feeling really good. I've been riding my bike a lot, doing a lot of yard work, and kind of fixing up the house a little bit, some things that I just let go. And I've had a lot of energy to do that. I'm still working my two jobs, which I very much enjoy, raising money for center in the square, as the vice president for institutional advancement. It's a mall of museums in downtown Roanoke. And also, I am still anchoring the five and five thirty, and the six o'clock news every night Monday through Friday. So got a lot of energy doing great, but I do want to talk to my doctor about the fact that my legs have been buzzing a little bit more lately. And I can't tell if that's true or if it's all in my head. Buzzing is the way I describe the feeling. It's sort of like pins and needles that's from the neuropathy that comes from the spinal cord damage, because I have sarcoidosis on my spinal cord. And I keep that feeling under control with gava pentan, which I take four times a day. And you know, I could busy some days, and I'm not able to, you know, take a pill. I'll forget the one that I typically would take after lunch, middle of the afternoon. I take them when I get up in the morning, usually mid-afternoon, usually dinner time and one at bedtime, right? And but a lot of times that mid-afternoon one. I'm in a meeting or I'm away from wherever I keep my cash of pills. And so I often miss that one, but it seems like when I miss that one lately that my legs have been buzzing a lot more. And so part of my annual checkup at the Cleveland Clinic is an MRI. And the last few MRIs, for several years now, have been fantastic. They have shown no enlargement in that mass on my spinal cord. But if there is some enlargement there, that would verify that I'm not just being dramatic, right? And I'm hoping, of course, that it is all in my head. And that there's really, you know, no change in sarcoidosis remains under control for me. But I, you know, that's just that once a year, go see my docs, get that MRI, and let's hope that there isn't something that's started to creep back into my system here, right? So enough about me, but that's just kind of what's going on. Today, your takeaway is going to be all about Scarlet and her mom Kelly. And they're coming up next here on the FSR Sarcfighter Podcast. Hi, I hope you're enjoying the Sarcfighter Podcast. You may be wondering, what can I do to help? How can I be a part of the sarcoidosis solution? It's simple. Make a donation to KISS, kick in to stop sarcoidosis. A hundred percent of the money goes to the foundation for sarcoidosis research. Look for a link in the show notes of the Sarcfighter Podcast. Welcome back to the FSR Sarcfighter Podcast. Joining me now are Kelly McBride and Scarlet Wash Lock. Kelly is Scarlet's mother, but it is Scarlet who, although she is very young, has sarcoidosis. Scarlet and Kelly, first of all, welcome to the podcast. Hello, thank you for having us. Yeah, I'm sorry I have to be here under these circumstances. Y'all are wonderful people and I hate that you're having to deal with sarcoidosis, but Scarlet, I want to start with you because you are you're a freshman at Ohio State. You're there as we're speaking. It's the you've just moved into campus. So you're just starting your college career, but you have had sarcoidosis for a long time. Tell us. Yeah, so I was diagnosed when I was 12 in 2019 and I'm 18 now. So I've had it for six going on seven years. It's been a big part of my life because really like most of like my whole teenage years I've had it. Yeah, it's been a lot. I'm sure it's been a lot and we're going to unpack all of that before we're we're all done today. But before I asked your mom how she handled learning that her 12-year-old had sarcoidosis, if you could describe to me how bad it was right when you were diagnosed and the conditions that led you to sort of go to the doctor in the first place at that time. So that's a great question. So when I was younger before I think like 10 or 11, I would get these really bad fevers. I would get them about once a month. It would be like a 24 hour thing. So we were like, that's weird. And the doctors told me I had this weird like fever syndrome. But it's nothing to worry about. So we're like, okay. And then I started just getting really, really tired. Like I was at Disney World and I would just get like I couldn't we had to go home from Disney World because I was so sick and it was like 10 in the morning and we're like, what the heck? Then I started to get these rashes on my legs. And I'm like, what is this? It's huge wells all over my shins. And then I would get little like dots on me almost looking like chickenpox, but they didn't hurt or itch. So we're like, that's super weird. So that's when we went to the doctor because of my leg rash. It got so bad where we were like, this is an issue. Went to the doctor. They told me I just had like cellulitis and it's not a big deal. But then we went to another another doctor and they were like, you know what, we need to get this checked out because this is not supposed to be happening. And really I remember when I was going through like the diagnosis process and just being so exhausted, like remembering how like I was out of school. I was like my my friend. I wasn't seventh grade. My friends are like, where are you? I'm like, I don't even know. I'm just going through so much and them telling me like the doctors telling me that I need to have this emergency procedure. Like basically like almost like the biopsy. And I was so freaked out. I was scared. And then they had it take me to an oncology doctor. And I was like, what was oncology? Because that's when I was like learning about that kind of stuff. And when I found out it was like cancer, I'm like, oh my gosh, that's so scary. Like, yeah, it was a lot. You know, being 12 years old, going to doctor's appointment, waiting here if you're going to be diagnosed with cancer or not is so scary. And you mentioned that you did a cat scan and what did it show? Yeah. So that was, I first got a chest x-ray. The first thing we ever did after like once my legs were popping. The your the rhythm and the dose in on my legs. The chest x-ray showed lesions are my lungs. And they were like, oh, that's not good. So then the cat scan showed the other lesions and the lymph nodes and my lungs were crazy inflamed. They were huge. So that's when they were like, yeah, we need to look into this. Yeah. And at some point they determined that you didn't have cancer. Yeah. That was the good news, right? That was great news. But then they said, but you have sarcoidosis. And we're like, well, that's great. But what is that? I don't think anyone in my family has heard of that before. And we're like, okay, what do we do? Right. Okay. Yeah. So I want now I'm going to bring your mom and Kelly, you're living all of this. I mean, I can't believe number one starlet's recall of all of this. It's amazing. But I've got grown children myself and I just cannot imagine what was going through your mind and your heart when you're hearing all these various diagnoses, how did you handle it? Well, I think I want to back up a little bit because I think that is the foundation of all of this. I knew in my mind and in my heart that there was something just not right with my daughter. She was getting these really odd fevers where she would get 104.7 fevers for 12 hours. And then she they would go away. And then it'd be like nothing, you know, like she was normal back to normal again. And this would happen. And she would have these about two or three a month. And she just became very fatigued to the point where, you know, it wasn't so much she was having problems catching her breath. But I also she was also during this time she was a competitive Irish dancer. And so she just she just didn't really want to go to the practices anymore. And, you know, I could tell like there was just something happening with her body. And so when I pursued, you know, medical support, it was more of yeah, we don't really know what's wrong with her. And we just think she has pediatric fever disorder. But the doctor who gave us diagnosis was also a little bit concerned because the fevers were coming more and more versus there's less and less. And that's how that that disease usually progresses, I guess. And then there was these rashes that scarlet would get on her body. And they would like she said they looked like these chickenpox type things. And then she so I pushed and I pushed and finally once the we had a great pediatrician and he guided us to a rheumatologist. And that's how all of this happened. You know, we got we were able to get the diagnosis for her. But in that span of, you know, almost with the fever started maybe a year and a half before. So in that year and a half, all this stuff was happening with my daughter. And here I am doing research on my own. I'm a mental health, I'm a licensed counselor in the state of Ohio. So I was having I had access to medical journals. So of course, here I am doing all this research and like what the heck is going out with my baby. And yet at the same time as we're doing, you know, we're going through these tests and we're going through these scans. And I remember thinking the first time that we had the X-ray dawn, it was she had spots on her lungs. And I remember the next step was the cat scan. And I remember like tear if I found out she had these spots on her lungs at work because I remember the my chart came in with the, you know, with the what was happening. And then a couple of weeks later, the CT scan results came and it said she had these lesions and she had these spots and she had these cavatory, whatever, calcified things happening. And you know, sizing what these spots were or lesions in her lungs. And it was just like how do I tell her this, right? So I think that was more of where where that fine line is because she was 12. She was the one experiencing this, but yet at the same time as a mom, you want to protect until we knew what was, you know, what we were dealing with here. And I think two, once we did get that final diagnosis, just because we got that diagnosis doesn't mean any of this stopped. And in fact, it got worse. She started getting headaches and stomach aches and all the great symptoms that come with sarcoid. And, you know, we had to then begin to say, okay, like scarlets, quality of life had diminished. I mean, I watched it diminished over these two years of when the sarcoid really, really made its face, you know, known. And just to see her, you know, I remember on Facebook one night, it was a Friday night. And I took, she, my daughter was laying on the couch bundled up and a sweatshirt and and a blanket. And it was football night at the at the school. And all she couldn't go out. And I remember posting on Facebook Friday night at with scarlet with sarcoid, you know, like it just like when people just don't didn't understand because she looks so okay from the outside. But, you know, she had pain in her knee. She had pain. Her, she has these swollen lymph nodes that have calcified that have stayed on her neck and she can feel them sometimes when she swallows. You know, and just these things and I had no idea how to support my baby during this because it was like, how do you tell 12-year-old her friends that this is what's happening to her as well as, you know, it's spread to her. You know, we had to do a casket on her brain. We had to do, you know, she had problems with her eyes. She was diagnosed with it in her, her gland in her eyes. And she was get, you know, so I mean, it was just, it was just constant, constant, constant. And I think one of the hardest things as a mom was like I said, do you tell her the results of these tests? Do you do you act like everything's okay? I think that was my hardest role here. What did you do? Did you tell her? So we, this was tough because we were guided by our doctor who basically said because she was 12, you know, they wanted Scarlett to maintain her 12-year-old status. But yet at the same time, her body wasn't allowing her to do that. So in like, you know, support, you know, mental health support, it was, oh yeah, just, you know, kind of just supporter and do this. It was kind of a very unknown area. There wasn't a lot of specific, you know, what you're supposed to do in this situation. And I think there was, I think it was more of, I ended up, Scarlett and I have had many heart to hearts over the last six years, our conversations. And it was more of me understanding more of what my daughter needed versus what I needed to do in this situation. And I think, you know, once I understood that, which, you know, when she's laying on the couch and has to cancel going to the mall with her friends, telling her, well, we know that you have this rash on your body. And, you know, you know, that you're not going to feel good today. And you know, that's because of what's happening with your lungs, too. It's all tied together, you know? So I think there was a way that I was able to educate her, which was what, which, what, with what was going on with her in a way that was sensitive to also some of the support that she needed without scaring her, I guess, is how I ended up, how I ended up doing it. Scarlett, is that kind of how you felt it happening? Yeah, I definitely, my mom was really like soft with me kind of like, I don't know if that's the right word, but she wouldn't just be like, oh, by the way, this result was like this, like, this is terrible. She wasn't like that. It was more of like, hey, like, we got a result. Do you want to hear it? Do not want to hear it? And I'd be like, well, it's a good or bad. And she'd be like, well, it's not the best, but like, it's not bad. And I'd be like, okay, well, we can hear it. And then it would be like, well, this lymph node got bigger. And then I'd be like, okay, well, is that good or bad? And she'd be like, well, it's okay. We'll talk to the doctors about it, you know? And so it was always like, the news wasn't always like, came crashing down on me or anything, like she didn't do pretty good, relaying the information to me. But yeah, like, I just remember like, some why first, like the first two years were definitely like the worst, I think, because we didn't even know how to handle it or deal with it, because even the doctors had no idea how to handle it. Like they were like, we'll try this medicine. And then we try it and then it'll work. So it's like, well, we'll try this one. We don't know if it's going to work. Or we'll be like, well, do you have any support groups? No. Do you know anyone else who saw our quote? Maybe in our area we can meet up with? No. Like, so we were like so alone through the whole thing. And like, literally like, we, I would have a lot of trips to the emergency room because like, I would just wake up in the middle of the night, like not being able to breathe. Like it was terrible. I would be like, mom, like, my heart's beating. Like, I could feel it. I don't have short word in my cardiac system. But I do feel it sometimes. It's really weird. They said like, they're like, it's not a big deal, but yeah. So, but I still feel it. So I feel my heart like skipping beats. And then I just can't breathe. Like I feel like I can't catch a breath. And I like, remember going in the ambulance one day because my mom's like, my god, she can't breathe. And I'm like, I can't breathe. It was so scary. So like a lot of those like, a lot of those like memories have become like core memories for me because they kind of like shaped, you know, how I view this disease. Yeah, I can see that. So, so I want to go back to something that when we were debriefing a little bit before we went on the air here, you said that when they examined your bronchial tubes and so forth, that they presented as if you were older. Can you tell me about that either one of you? Yeah, so I don't know if I actually ever shared this with scarlet before, but I do remember the doctor coming out. And after the long biopsy and because I was knocked out with anesthesia, they came up to me and said, oh, we knew the first second we got into her airway because it was just covered in granulomas. And her lungs looked like a 60-year-old person that was, you know, that had sarcoidosis. So that's how she presented at 12 years old. So this would have been what, 2019? Yeah, 2019. It was like three days before Thanksgiving. Yeah. Oh, wow. Not that you remember anything. Oh, I guess. Wow. So was the first line of defense prednisone? Yeah, so they put me on the 40 milligrams of prednisone a day. There was also like naproxan and there might have been like some other like supplement or pepsid because my stomach was having my stomach really hurt from whatever it was. But yeah, prednisone. And that was just terrible because I got like being in seventh grade and then just instantly like gaining 30 pounds in a week is terrible. Like, oh, my I was just so sad. And it was I was just like my mental health just like diminished because I was like, oh my god, this is terrible. I don't feel good. I don't look good. I don't want to go to school. I don't want a lot of I started getting bullied because of it. And like the weight gain with the prednisone in my face swelled up from the water retention or of what's like moon face or whatever. And then actually we had COVID hit. So I kind of was happy about the cat because I was like, yeah, I don't get to go to school. But also that was a whole another turn because we were scared to death of me getting COVID because my my or my doctor like do not get COVID because we don't know what's gonna happen. We don't know. So yeah, but prednisone was the first line of defense. And after they didn't want to keep me on the long-term steroids for that, you know, that long because it can have bad side effects. So they let me get off of it. And then I had to go right back on because it just it did not my body didn't like going off of it. But that's when we started the methatrexate. And I was on that for a while a little while, which we came off of that again. And then had to go back on with more prednisone. So yeah. Well, so by now you know that there is no cure for sarcoidosis. And you know that in some cases it self resolves and in some it doesn't. And you are among the lucky unlucky few of us for whom it doesn't. So gosh, I think go ahead. John, I'm wanting to add, you know, everyone who we were in contact with medical wise, they would tell us, oh, this is just one one flare. That's what they would refer to it as a flare. This is just her flare. It's going to go away. And you know, as I think back as as mommy, right, you know, you start to think about these things. I really think Scarlett had this when she was a little bit younger. I remember when they diagnosed her having chickenpox when she was in kindergarten. I remember I had to take off a week of work. And I'm like, but then they're, but I'm like, she had all her vaccinations and like that same chicken pot, posh rash, they still have it. She still gets that red that same rash today. So it's like, you know, that's the sarcoid rash now that we're finding out. She also would have mega fevers when she was younger, not as intense as they were, you know, when she was diagnosed. But definitely like I started seeing some of these things that were kind of repeating themselves. But they kept telling us, oh, she's going to wake up one day and this is going to be gone. And I think it was very, very difficult to understand that here it is. My daughter been dying, you know, she's been diagnosed with this crop, you know, this disease. But yet everybody kept telling us in the medical field that it's just going to go away. Just get through it. We're just, just get through the next day because you might wake up tomorrow and it might be gone. And so it's like, we lived in this. How do I want to say this? Like, false reality for a very long time, you know, because, you know, we had the hope that this was just going to kind of go away. But then I started feeling like this was something that wasn't going to go away. And I think Scarlett and I had this conversation about three years ago where maybe two and a half years ago now where, you know, we kind of, this again had a nice heart to heart saying, and we don't believe that, you know, I kind of went to her gently and said, I don't believe that this is ever going to really just dissipate or, you know, you're not, you know, some, the talkters had told us at the beginning that she's going to wake up and just, you know, be okay. I said, we haven't been able to get this. She's been in a flare for the last three years. I mean, it's not like, you know, it comes and goes for her anything. It's constant. And, you know, we really had to look at that and say, you know, this is a disability for you. And we are going to treat it as a chronic. Mommy's going to start beginning to look at it as a chronic disease. And I'm going to get bringing the supports that we need, you know, to the point where, you know, we, I supported her and getting a handicap pass because she was having problems walking, you know, to classes. When she was taking classes at the high school and, you know, the community college and I told her, I said, you need to get, you know, advocate for yourself with this disease as much as you can. And I was able to take her to a retreat. I took her to last summer for Sarcodosis and I just wanted her to begin to be around people who got it, who understood, who knew what she was feeling without her having to say anything. So I think, again, I think once we accepted that this was something that was, I mean, sure, can she wake up tomorrow, I guess, and it could be gone? Yeah. But I think at the same time, with us knowing now, we put all these things in the place for her. It's very much more manageable. And I think it's much more realistic. Wow. So that is so many, so many things because of your age, Scarlett, first of all, you live in Ohio, which is, and Kelly, you said you live in Aurora, which is not far from Cleveland, but Cleveland Clinic, where where I go, and I love the folks up there. But she was too young to go there, right? She was 100% too young to go there. And actually, it was, I had a very hard time. Her pediatrician had retired during all of this, about six months into her being diagnosed. And we had a very tough time just having another pediatrician take over her case and her care. And I remember calling and all this stuff that was happening just for nobody wanted to touch Scarlett. And they kept saying she needs a rheumatologist. And I had already, we had already been up to the Mayo Clinic because I said, you know, I want the best people on her. And, you know, we need to treat this as something that is, you know, what do I want to say? I want to find people who know this, who have some answers, you know, who have worked. Experience. Yeah, exactly. And so when I did the research, it was funny. I was like, oh, Cleveland Clinic has the Starkadosis Department. But because she was 12, they only see 18 and over. And I called, and I called, and it wasn't until a family friend was at a party. It just, it just aligns perfectly. They were at a party and they met with one of the Starkadosis doctors that were there and they told them about Scarlett's story. And they were like, oh my gosh, we'll take her. We'll take 16. I was still 16, so they actually pushed for her and talked to the head of the department. And they didn't make a, you know, what do I want to say, an accommodation for her to be seen there. So now we were able to move our treatment team to, now we are at the Cleveland Clinic. You are. So you, but you started out at the Mayo Clinic here to go to Minnesota. Yeah, correct. How far was that? That's like a day drive in a bus, right? Two, two, uh, two day driving trip or two or three days. It's like, I think 13 hours, 16, 16 is longer than that. Yes. Wow. And I complained about the seven hours that I have to drive to get to Cleveland from Rowan, Oak, Virginia. Yeah. So I will, I will not complain anymore. Wow. And, uh, she's so, so Scarlett, you're in high school, you're, you're going through, sounded like you were a dancer, you were athletic. But now your mom is saying that your knees hurt and all these other things. So were you, were you able to have anything that resembled a normal high school experience? So I, if that's wrong because once it was already weird because we were, I started freshman year right after like COVID kind of was coming to an end. Um, so it was already messed up from that. But I guess I still try to make friends, but I have to tell them I have to be like, hey, by the way, like I might not be able to go out like this day because I don't feel good. Like, there's a lot of restrictions kind of I'm taking this medicine, like method tracksate, uh, messes with me. So like I'll take it and then the next two days I feel terrible. Same with the Humera. Like I take that now. And I, I'd stay on bed the whole next day and after I take it. Really? You do. Yeah. Um, and so I, I guess like, I try to just kind of stay involved in a lot of things. So I was in student government and I was my senior class vice president. And then I um, I was in the national honor society. So I would do a lot of things with the community and I'd do a lot of volunteer work. And um, I try to just like go to all the things I could go to, you're like football games and stuff. But the end the senior year, I just, I didn't go to any really anything because I was just like, I don't feel like doing going to this. So I had a couple like good friends that would like help me. Like if I was, I know I had a really, really, really bad like, uh, last year, last October, kind of like a flare almost, but I'm kind of always in a flare. So it just got way worse for like a couple of weeks and they would like, they brought me cards and they brought my candy and stuff. So like, that was like really nice, you know? Um, so I guess it's kind of just like, I grabbed on to like the people who I knew were like real and like trustworthy and loyal and under could kind of understand, I guess what I was going through a little bit and use them as like a support system to kind of keep my high school, I guess as normal as possible could. But then um, I got, I get this kind of funny, but it's hard with like kind of fitting in in a way because kids are so judgmental. I feel like especially my high school has 2,000 kids in it. So I'm seeing a lot of people a lot and I can't tell everyone what I'm going through. So I was, I got a handicap pass and of course, that's like normal. I mean, if you need it, you need it. But to me, I was like, this is home bearers in parking in a handicap spot in school and everyone's going to see me or um, we had like passes to use the elevator. And I'm like, people are going to see me use the elevator and think I'm like crazy and things like that. So I guess a lot of it, I just had to be like know that I'm not going crazy and people, some people just don't understand. Like I even like as junior year, I was getting bullied because I like to really do a lot of advocating for it, you know. I don't know if you've ever looked at my Instagram, but I have like a whole highlight on there and I post a lot of things I try to do and I've been working with the foundation for short-quad research. But on one of my posts, there were girls talking about me saying like she's acting like she has cancer. She's acting like she's going to die tomorrow. Like is she's being so annoying about this? Like no one cares. Like it's not a big deal. Like all this stuff. And like I'm like people like that just, they don't understand, but you have to like kind of get over it and just be like they don't matter, you know. Yeah. Number one, I'd love you for having to deal with all that. I mean that's just, I mean it's in one sense it's predictable because high schoolers are high schoolers, but I hate that you had to be on the receiving end of that. On the other hand, I just heard you say your vice president of your class in a huge high school. So the naysayers didn't really have a lot of impact on your determination to do things, did they? Yeah, no. I was just like it kind of made me more dedicated to do things because I just was like why like if you, like clearly they just they don't have anything to to do. So they're just going to talk bad about me, but yeah, I think I graduated with like 120 plus volunteer hours. And I did, I, I had 544 students in my class, I graduated in class. And I had I did my graduation speech in front of them all and Cleveland at the Wulstein Center. So I was a renaful of people. It was so fun. And just like extra things like that. I just like I just love doing that because you know, it kind of makes me like feel accomplished like even though I try to like not make my disease like of who I am, but I really like want to use it to like an advantage kind of of it makes me more happy when I can do things because I'm like getting old like I'm more like getting over a challenge kind of you are wise beyond your years. I mom, I can see you just kind of nodding knowingly. Yes. And I think this has been part of it. Scarlett is so intelligent. And when she's wanted to be a doctor. And since she was like five. And well, first it was a dinner. And then it turned to a doctor. And so I think one of the questions you asked about high school was you know, she was an honor student. And it was really tough because she started around her diagnosis. She started really, really struggling with retaining information. And she was just distracted the fatigue, you know, and we had to have a conversation. Again, a heart to heart about pulling her out of some of these honors classes. And you know, what that looked like for her future career because it was so important for her to be academically successful. And I think one of the things that I supported her in doing is even though we had to pull her out as some of these, you know, classes to kind of more, you know, put her time into other things. And and that's what she did, you know, she was able to spend some more time even if she wasn't feeling good, even if she could go volunteer for an hour. And then I would go pick her up from wherever, you know, just still having a well-rounded high school career the best we could played with the limitations that she had every day. And I am just so proud of her. I have a smile on my face because she just was honored and and chosen to be the Mardi Gras Queen, Airport Harbor, Ohio. So we had the opportunity a month ago to see her crowns as the queen. So that was, you know, she she's done really, really great with even with living with this disease every day. So she's my inspiration. I'll tell you. She's mine too now. I have, I have, I have, quote, unquote, known her for about 41 minutes now. And it's just killing me. What are you majoring in at the Ohio State University? So my plan, hopefully it all works out is, well, I'm, I'm healthy rehabilitation sciences with pre-med track. So yeah, so I have a couple of years, but I hope that I can go to medical school here too and do that. And yeah, I want to, I really want to be like a, I kind of want to be like a pulmonologist or rheumatologist, something like that because one of my doctors at the Cleveland Clinic in the Sarkoid Department, Dr. Robario, he is like so awesome. And he's like, hey, like kind of was the only one who like volunteered to actually take me once they like decided to let me come into the department. And I like love seeing him because he's so nice. And he like, let me, for my senior product, he let me come and do rounds with him and sit in clinics with him. And I just like loved it so much. I didn't like, I think I was there for 20 hours. And I just like was like, oh my god, and it was so funny because I like knew what I was doing because I've taken a bunch of college like courses for like anatomy, physiology, biology, things like that. And just like, I was, he was like, do you know what that is? I'm like, yep, got it. I was like tree and bud. I know that. Or like, what's that like fish? I was able to like tell him like, there was an issue with one of the patients of where they were supposed to be. And I'm like, he's, they're supposed to be in the cardiac department, not in pulmonology. And he's like, you're right. And then they moved him over to the cardiac department after I said it. So funny. So that's awesome. That's awesome. He's my doctor. He's my doctor too. After Manie. Yeah. Oh, oh, my god. Yeah. Yeah. That's crazy, isn't it? It's so, oh my god. Yeah. So, man. Well, the next next time I go in for a treatment actually, which is coming up next month, maybe you'll be there in clinic with him. You can guide me around. So because I'm like a lost mom. You just tell him that you were on a podcast because he'll be like, oh, my god. Oh, yes. He'll be like, oh, those two. You guys need to be those that pair. I will. And I'm sure he'll have nothing but nice things just that. So, how are you? Are you going to be able to get around campus? Okay. And get your classes. Okay. I mean, you know, it can be kind of a wintery up there. Yeah. So, I mean, I worry about you. I got like, I'm my car. And I got a accommodations for classes for like, disability. So hopefully I'll be able to like, if I need extra time on an assignment or something because I'm not feeling good, like, they'll understand. I also have my emotional support cat Max. I got him because I just felt like I really needed, it's actually living like alone. Like, I have like anxiety and like, things like that just from the disease, you know? And so I have him with me. I don't have him here yet because I didn't bring him to move in because I wanted to move in before I brought him. But yeah. So I'll have him to help me. And yeah, like, basically, I think I'll be okay. I'm just really worried about being too like fatigued to go to class or just I have like chemistry first semester. I'm like, I don't know how I'm going to do with that. Like, I just, I'm worried about being like limit, like having limitations like that. So I guess the only way to see is do it. But I'm worried. But, you know, okay. All right. So, so you are now six years into this. You're taking the Humeira. I'm surprised. I know how I have almost zero side effects from Humeira. Like, none. Like, I take it, go to work, ride my bike. I don't have any fatigue. None of those things. But I don't have pulmonary either. I have neuropsychodosis. So I'm sorry to hear that you're dealing with that. But I'm curious, like, what is your like day to day walking around just health feel like when you're on like a medium day, like not the worst and not the best? Basically, I kind of like, I try to keep like a same schedule, just so I'm not like stressing myself out. But my knees are like really bad. Like, they hurt basically like all the time. So I try not to really do like that much of like physical activity yet. My doctors have told me like, you need to go and be physical. But I'm like, it hurts. Yeah. Yeah. So, yeah. So I, yeah, I kind of like my day to day is just I spend a lot of time. I guess it's kind of summer. So both like during school, I have to go into class and probably just snapping when I'm not studying or going to class. But yeah, I, I nap a lot. And I, um, I try to keep like my social life good. But it's hard because people don't really understand like what it is to like how does he's also advocating for it? They're like, why do you have a zoom every week? And I'm like, because I'm trying to talk to new people. And, um, yeah. So today, I actually did go to play pickleball. But I wasn't only able to play one game because of my knees started hurting. They did. They started hurting after. Oh, wow. But yeah. So, but you were able to play the first game, right? Yeah. Yeah. Okay. All right. But that's, I mean, that is a game that's hard on your knees. There was a lot of twisting and turning and it's, but like, this is kind of, this is probably bad. But I see it kind of like, I know it's not going away. I also know that like, my knee pain isn't, it's not like, I have like a rip like ligament or something where I'm, it's, I'm gonna hurt it if I play on it. So I'm like, it's just, it's just pain. And I like, I like playing doing things. So I don't want to like stop doing those things. Yeah. Why don't you tell John what you did this summer? And Tuesdays and Wednesday nights, Tuesdays and Thursday nights. Didn't you play in a softball? Oh, yeah. Yeah. I did. What was your position? I actually had to squat down behind home play the worst possible thing I could be doing for my knees. And I don't care because I love it so much. I haven't the whole tire time I've had circuit because I've been playing softball since I was like seven. And so even since I got diagnosed, there was one year I didn't play it because I was really sick. But all the other years I've played because and caught because I love softball so much that I just have to play. Yeah. Fast pitch or slow pitch. Fast pitch. Oh my god. Are you kidding me? Yeah. She does not let this disease put keeper down. Yeah. That's, yeah. That's, I'm really impressed. I can't even run the base without like not being able to breathe. I'm like, I'm like, I can't breathe. But I just don't play. Well, good for you. Good for a man. That's just awesome. And just, you got to, you got to keep that love for whatever it is. You know, you just got to keep it and use that as motivation. Really? Really. Yep. And Kelly, how are you doing? I mean, it's hard enough to send somebody off to college. I mean, I remember when my oldest son went away to college. I just cried. It was so hard. And he wasn't sick. Yes. I mean, again, lots of hearts to heart conversations before this happened. The plan was Scarlett was actually going to stay home this fall. And we kind of had a, she had a decision that she didn't want to stay home anymore. And so last minute, we were able to reconvene and accept the, you know, the offers that she got, which is why she's under, you know, she's at Ohio State. She just really wanted to do the medical school. I really feel that 100% that knowing, I think we kept saying again, you're going to feel better. You're going to feel better. It's going to get better. And the reality is that it wasn't getting better. And so I think we kept thinking in Scarlett, too, that, you know, we were going to, she wasn't going to take one year off and kind of get her health back to where it needed to be. But then I think we realized that this is kind of what it is. And so with that being said, Scarlett really, really wanted to continue her plans of going away to school and, you know, going for pre-med and, you know, helping other people in the future. So as soon as she told me this, she's like, mom, I'm doing this. So you better get on board or, or else, you know, and I was like, oh, my goodness. Am I pleased that she's not too far away? I could still get in the car if need be 100%. You know, she was given a thermometer before she left. You know, we went through, it's not going away. She gave me a thermometer, thermometer. Because it tells me she's not feeling good. The first thing I'm going to say is, did you take your temperature, right? Okay. That's right. Okay. So at least you can't say no, right? The emergency room is, you know, and again, I think that these are the things that people who don't live with this don't understand that there's a lot more to this than just letting your kid go to school. You know, it's making sure she talked to the accommodations department. Like I said, making sure that she is, you know, able to, you know, get to her, you know, where is her apartment in the building? You know, do we have to go up steps? And if yes, what is that in, you know, encounter? And again, you know, really making sure that she, you know, really takes care, you know, takes care of herself and takes her medications and all that good stuff. But yeah, I'm terrified, but I know, I know that I just hear her talk. And again, I'm just so proud of her. And I know she's going to do the best that she can do with what she has. And I can't, I can't, my tears might be tears of happiness as well because I'm just so happy that we're six years into this. She is where she is, you know, it was a long, it was a long journey. Yeah, she deserves this. So, you know, I just, well, I've got both of you here. I want to ask because, you know, I've interviewed all these experts for this podcast. And I've been, I've been doing this podcast for five years, right? And my worst year was 2019, which was three years after I was diagnosed, but I had a really bad flare in 2018. And then the guys at Cleveland, just through everything in the book at my, my body and it was just, it was an awful year, it was an awful, awful year. But so in the five years that I have gotten really involved because of this podcast, they're, they're interviewing the researchers and talking to doctors. There's no proof, but the consensus is number one, that you're not born with sarcoidosis, but people who get sarcoidosis are born with a predisposition for it. So it's just sitting there idle and then something triggers it. And the most common thing I've heard, maybe you guys have heard this over and over, I don't know, the most common thing that I've heard is that you breathed in something that triggered it. And so we hear, for instance, the people who are around when the towers collapse for 9/11, very high incidence rate of sarcoidosis, firefighters, forest fire fighters who breathed in smoke, very high incidence of sarcoidosis. So Kelly, can you remember a time or scarlet, can you, can you either, if you remember a time when maybe there was something that was unusually intense in terms of something you breathed in or were exposed to even for a short time? Yeah, Jen, I've wrecked my brain on this for many years and when she was first diagnosed, I was, I felt very guilty about not being able to have seen this sooner or is there, you know, back in the day she would have, you know, she, Scarlet, you say, have this thing called, we used to, we, we, we joked about it. It was called the seal cough because she would sometimes get this like cough and it was, she would sound like a seal and like a bark kind of bark and dry cough. When when she was very young, yes, that could be a group. No, well, but it, again, it followed her through this whole time. So it wasn't like it everyone away. But like, I guess it's just like, I felt very guilty of not pursuing, you know, more care for her, you know, when some of these other symptoms were happening. But again, the doctors would say, oh, maybe that's a group or maybe it's just the whooping cough or, you know, like, just the whooping cough, right? Yeah. When you put it all together, you know, then you start to see. So I did, I did have a lot of guilt with this, just, you know, getting her the first off, you know, the care that she needed. But I do think that, no, I end, you know, she has siblings and none of them had had had diagnosed with this. I have not been that, you know, like in a place where we were living, I thought about mold and things like that. But none of that ever came, you know, into, you know, as a something that she was exposed to. I do know that what year was that scarlet year elbow? The year, the year right. 2018, it was like almost exactly a year before I was diagnosed. I had, um, I got a, I got a spider bite on my elbow, or that's what they said. It was a spider bite, but it got infected with strep and I was in the hospital for two weeks, um, with like a swollen elbow, basically. And I like, it was like pretty bad. Like I almost went into cardiac arrest and stuff. And they never said that I that had anything to do with sarcoid, but we've kind of had our suspicions that maybe that's what triggered it, because we know that normally there is a trigger to the sarcoid. Right. Um, when I was at, um, the, the retreat in, um, Seattle last year with the carrying hand sarcoid foundation, there were, I think there was like five or six women there. And all of them got, I think, I think five out of the six of them was, was diagnosed with sarcoid like a year after they gave birth. So I was like, maybe that's something that triggered it for them, you know. So some sort, some sort of trauma to the body. Yeah, that's fine. Right. Yes. Yeah. Huh. Well, I don't know, um, man, I, I just thought, you know, since like, you know, I'm diagnosed when I'm in my, what, fifties. But so I had to look back at 50 years of, was I exposed to something along the way, yeah. Scarlet's case, you know, she don't we've been alive for 12 years. So that defined that narrows it down a little bit. So maybe she can be a one woman case study. I don't know. But, um, well, listen, this has been a great conversation. And I, I appreciate it. And Scarlet, of course, I wish you all the, all the best. And I can't wait to see you when you graduate with your medical degree. I just know it's going to have another podcast then. Yeah. Well, yeah. Maybe you can take over this podcast one day. If I get worn out, I, I think I finally found the perfect candidate. Maybe, maybe I can find a way to cure you sarcoid when I'm practicing. Right, okay. I'll be a guinea pig. I will. I will. I will. All right. Well, all right. Well, thank you, guys, so much. This, uh, this will be coming out next Monday. Okay. Awesome. Yes. So nice talking with you, John. So much for having us. All right. Take care. Okay. Bye-bye. Well, thanks to Scarlet and Kelly for joining me here on the podcast. And what wouldn't it be great if Scarlet fulfills her dream of becoming a doctor? And then who knows? Maybe one day she'll be treating sarcoidosis patients. That would just be amazing. But she is just a wonderful young woman. And as I said before, why is beyond her years? And we wish her all the best. And we want to thank her for everything she is doing to advance the cause for sarcoidosis by sharing her story and everything that that that she is doing and her mom, Kelly, as well. This good time to contact me, by the way, if you'd like to share your story on the podcast, please contact me at
[email protected]. There's a link in the show notes. The official Sarc Fighter song is zombie by Mark Steyer and his band, The White Hot Lizards. The podcast comes out every other Monday. As I'm speaking today, my trusty dogs, Dougal and Shandy are not curled up in my office because Mary's home, so they're hanging out with her. Man, I'm the one who feeds them. Anyway, the backstory to the founding of the Foundation for Sarcodosis Research is episode 11 with Andrea and Reading Wilson. Please follow Sarc Fighter on Facebook, Instagram, even on Peloton, my cycling blog, Carlin the Cyclist. Has a section called Cycling with Sarcodosis. If you're new here, just trying to figure out what Sarcodosis is. Listen to episode two with Dr. Simon Hart. My story is episode one. Please send me an email. It's in the show notes,
[email protected]. Until next time, keep fighting.
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