Case #02: Athena

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 so he from some chronic illness and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Bright, the checko, and this is symptomatic. Athena Garibalini instantly hits you with her infectious energy and enthusiasm.

She has such verbs for things she's passionate about, including her little Bassett hound Homer, a name that combines a reference to the Simpsons with her Greek ancestry. He's not I wanted a dog that would like lay at my feet and snore and just kind of be this cute little companion. And he's he's just so funny. He's a clown. He keeps me laughing. Athena's warmth is apparent from the

first time you talked her. Her older sister, Elizabeth, remembers her unique ability to connect with others from a very young age. She had an interesting personality as a young kid. She loved to be around older people. You know, she was just outgoing and kind of maybe you could say, kind of aloof, you know, but just in a fun way. But you wouldn't think to consider the insecurity Athena had to face throughout her life, as a string of mysterious

and painful symptoms consumed so much of her freedom. So right around puberty, like thirteen fourteen, I started noticing these tiny little pimples appear um in between my thighs, my indoor line. I had a couple in my armpits. They weren't anything like other than you know, you sweat there,

you get pimples, right, it's chafing, its friction. So for several years this would happen, and sometimes they be a little bit bigger than normal, but they weren't anything that raised an alarm or caused me to think something is wrong. And it's puberty, so your body is constantly morphing and changing and poking out in different places. Yeah, these are just pimples that are there. They come and go. It wasn't anything that made me think that this could be

long term. But the location of the pimples in the armpit and along the groin, or the first sign that some unique pattern of irritation maybe at play here. Even if Athena wasn't initially able to recognize the unusual nature of her body's behavior, when was the first time that you realize this wasn't just normal puberty bumps? So at one one day, I was having this kind of growing pain um in between my cheeks, and eventually I couldn't sit down, and so I had to go to a

doctor because it just wasn't going away. And he told me that what I had was a perianal abscess. He told me that I would have to go under anesthesia and have an incision and drainage for it, and um, I had this surgery and I was still kind of discovering my body. You know, at twenty one, you're not. You don't really have a whole lot of confidence in and maturity yet in that sense. And so the surgery itself was odd for me, right because I woke up upside down and I had netted shorts on that I

didn't have before um. And so you know, just to think that, like, you know, you're going under anesthesia and people that you don't know are operating on a body part of yours. It's sensitive, uncomfortable both physically and mentally. Athena was desperate to do whatever she needed to in order to prevent this from ever happening again. I asked the doctor, so you know, what is this like? What causes this to happen? How can I prevent this from

happening again? Because I really didn't want to go through it again. And he looked at me straight in the eyes and said, Perry, anal abscesses are caused by poor hygiene, and if you want to stop them from happening again, you need to take better care of yourself. He tells me, I need to shower twice a day, and he tells me that I need to stop scratching myself. And I wasn't scratching and I gotta tell you again. I was

twenty one. Things were a little bit different back then, and so I was just naive in my thinking and my youth. And he was the doctor, right, so if he said I had a hygiene problem, I had a hygiene problem, I wholeheartedly believed him. But he didn't elaborate. So basically, he's making you feel dirty, Yeah, very much.

So I went home and I was mortified. Like I was thinking about the staff in the outpatient facility that I had my surgery in, and all the people that I came in contact with, like them thinking I was there because I was dirty. And then I thought, oh my, Like, I can't talk about this too much with other people. Maybe you talk to your mom about it, maybe you talk to your sister or a couple of friends about it, but like, in general, you don't want to mention pain

in your groin and your breasts and your armpits. It's hard enough being your own advocate as a young adult, let alone, while trying to hide something so sensitive. Feeling overcome with embarrassment and shame, Athena is desperate for relief. Over the next couple of years, I started hyper examining my hygiene routine, thinking like, maybe it's the soap I'm using, right, so let me change the soap. Maybe I'm not washing good enough. So now in these two showers that I'm

taking twice a day, i am scrubbing extra hard. I'm getting all those sweaty areas, Like maybe you need to change out my wash. Class More, Elizabeth recalls her sister working diligently to change her habits. She's a proactive person, so she's always looking for a solution instead of, you know, sitting with the problem. She's always looking for a way to make something better, fix it. And you kind of start going through this process of it's something I'm doing,

let me test it. I started going to write aids a lot, and I would go into their acneile and their face wash section, and UM systematically was trying product after product after product after product, going maybe this is just like acne on steroids, and maybe you'll have an area of common. You think, Okay, I've got this, Like they stopped coming. I figured out what it is, and then you'll get one and then you're right back to

the drawing board of what is this? The flare ups continued no matter what she does to treat them, and the abscesses that were once pimples are now starting to permanently change her body, to permanently disfigure her. It really, for whatever reason, probably a good ten years focused heavily on my armpits. Once it started in one armpit, it was only a matter of time before it started in

the other. At one point I had a string of five very large black heads right that we're right next to each other, And within about a month it had formed into this weird looking almost like not of skin and tissue, and it was red and it was painful, and then it would drain. My arm pits went from normal looking to I don't even have the words to

describe it. Um it was scar tissue. It was all of these little holes and ridges and lumps like it was different because the skin was starting to get deformed. I cannot imagine. And the horror that you must have felt like every single morning going into the bathroom, closing the door and then checking to see if it's gotten better, and it's just getting worse. It was watching my body be start to deform like by itself, like it was doing it to itself, and I couldn't do anything to

stop it. A decade goes by and Athena still doesn't know or understand what's happening to her body. No matter why changed in my life, it was just becoming its own, its own thing on my body. It was horrifying. So you are trying to not only hide your symptoms, but to hide your pain as a direct result of what

you're experiencing. Yes, I was a manager and I I lead a staff, and I would come in having difficulty walking, but I didn't want to admit to my staff that it was because I had an abscess in my growing and I'm trying to make sure that my coworkers can't see that. You know, I have drainage on my clothing. I'm terrified to sit down in places because if I do, like am I going to stay something? Am I going to leave a wet spot when I get up? And

then I'm terrified, like advantages. I wasn't really good then at my bandage game, and so like our bandage is going to fall out, you know, like they had to see this when I would do bandage changes in the bathroom at work, like so meticulous about wrapping them up so that nobody could even tell what it was so much of the focus became not only controlling this disease but hiding it. It felt like a full time job.

And then I'm going home and looking in the mirror and crying because no matter what I do, I can't stop this from happening. Though keeping her growing concerns very private, the physical changes Athena was experiencing were becoming anything but hidden. Looking back, Elizabeth recalls her sister's boundaries with her own body. There were many years where, you know, we would go to the beach and she didn't want to go, or you know, just wearing a tank top would be a

feat because of the scarring and the wounds. How is this impacting your confidence socially in terms of relationships, in terms of of leaving the house. Um, I wasn't wearing tank tops. Um I went probably a decade without wearing a bathing suit. I got married, but I didn't talk about it with anyone. Despite her silent hardship, Athena meets Carlos and feels like she's connected with someone who understands and accepts her vulnerability on new levels. But still her

divide with being open with others deepens. She keeps the severity of the pain from her close friends and family. Looking back, her sister regrets missing the chance to share comfort and understanding with Athena. I wish I would have known, but I didn't um And you know, you don't have to live in shame and in fear. Athena's symptoms were as painful as they were insidious. For years to follow, she managed the constant irritation and persistence of her painful

lumps and lesions, But suddenly her focus changes. When Carlos becomes very ill, Athena is about to face a new fear that will desperately renew her drive to finally get a proper diagnosis and treatment. This is now when I have to go to a doctor because I have a husband at home whose life is depending on me taking care of him, and I don't want to give him anything infectious. We'll be right back with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast.

Athena Jarbellini spent over a decade learning to cope with and justify the constant pain and inflammation that she was led to believe was caused by poor personal hygiene. Despite a tireless hunt for improvement and relief. But as her husband started to face a cluster of health issues, her concerns for her own health as his wife, advocate and caregiver were coming to a head. Carlos had gotten very sick,

very rapidly, and required a severe appendectomy. He was in a lot of pain and stubborn, so I didn't get to the doctor right away, but for about a year all of the consequences. He was a diabetic and so it got reinfected a couple of months later. You know, they were pumping them with so many antibiotics that it sent him into diabetic rhytnopathy, and so he had eye surgeries and like it was just a whole series of medical events. At that time, I was a hospital wife

for the most part. Now her spouse's main support system, Athena's health issues quickly took a back seat. It wasn't until she was concerned about putting her husband at further risk that she decided to face the concern she was letting loom in the background of her everyday life. In our apartment, I kept a near sterile environment so that he wouldn't get an infection again. But I remember one time in one of the hospital elevators, I saw this poster for MERSA and I thought, it kind of looks

a little like what I have. For those not familiar, MERSA is a cause of staff infection that's difficult to treat due to resistance to some antibiotics. So I go home and I look it up and I'm like, kind of does but not really, but maybe. So this is now when I have to go to a doctor, because if I have something infectious, I have a husband at home whose life is depending on me taking care of him, and I don't want to give him anything infectious or

you know, cause him to get even more sick. With a susceptible husband relying on her care, Athena decided she could no longer risk letting her so called lack of hygiene and endanger his life any further. So Athena went back to the doctor for the first time in seven years. So the first doctor visit that I went to, the doctor takes a look at it and says, it's not mersa, it's mercin, which is another some sort of infection or whatnot. But he gives me a prescription and he says, if

this doesn't clear up in five days, come back. So this was an urgent care that I went to write, and one that had a lot of hours and a lot of different doctors, was really busy, large practice, And so I went back in five days because nothing happened with it, right, no noticeable difference, no noticeable change. It was exactly the same as it was before. But this time I got a brand new doctor. And I always like to joke and like, give the duke, how is

a reference? He looked so young, he was a baby, and I had just probably graduated medical school and you know, I just got a more up to date education. And so he takes a look at my armpit and he says, that's not mercia, that's hydrodenius superitiva. And I looked at him and said, hydro what what can you repeat that? What did you just say this was? And he gives me this hand out and he says, this is what it is, you know a little description of it, and you need to go see a dramatologist and sends me

on my way. I went home and I googled. Some of the images looked exactly like what I had, and I knew, yes, this is it. This is definitely what I have. But I gotta tell you, ten twelve years ago, Google was not kind to this disease at all. I was horrified at what I saw. Hydrogenitis superativa or HS is a chronic skin condition. It's an auto inflammatory disease, meaning the immune system attacks the skin cells, causing inflammation

in those areas. Dr Kirby, an associate professor at Penn State Health who was treated and advocated for HS patients her entire career, helps explain HS and its symptoms. So HS or HydroD Nitis superativa, which is quite a mouthful, which is why we say HS first and foremost, is a inflammatory condition. And I really emphasized that because it looks for all the world like an infection. Because let's

say we got an injury. Our immune system reacts to that and wants to wall it off and protect the rest of us, So it makes it red and puffy, and the chemicals that are released make it painful or itchy. Well, the same immune system that reacts to foreign objects or bacteria that way is now just overactive and it seems to focus in on the hair follicle for reasons we don't totally understand yet causes all of those same reactions, but there's no infection. It's red, it's puffy, it's swollen.

Sometimes it's so inflamed in our immune system is so powerful it actually causes the skin to break open, so ulcers form scarring happens. And it's usually in folds of the body, so under the arm, under the breast, in the fold of the leg, on the genital area, the buttocks. HS was once seen as a rare disease but has now been found to be much more common today. Between one to four percent of Americans suffer with HS, and despite affecting almost thirteen million people in the U. S Alone,

HS is still commonly misdiagnosed and missed by doctors. Dr Kirby explains why the common symptoms often go overlooked. You know, it's almost acne, but in the wrong areas for acne, especially in the US, because we shave as women very frequently under the arms and in the groin. Again, we presume it must be because of something we did. Though there's a lot of new research and treatments rapidly emerging, HS is still very poorly understood, especially within minority communities.

For example, HS is found to be more frequent and severe in black communities than in other racial and ethnic groups, so the emphasis on widespread research, education, and advocacy is key. Dr Kirby helps explain in what this disproportionate effect of HS on minority community says about understanding the condition. Why are some populations of people black or Hispanic female versus male. We don't quite understand why that's the case, but whenever we see that kind of a difference, it means there's

something to look for. UH. People with Down syndrome are also more likely to have HS, so trying to understand why those things are associated helps us understand why it just is maybe happening in everyone and helps us to then treat it. I just have to say right out of the bat, so I don't forget. I have so much hope, so so much hope, And I don't think that that is always a message that people here when they search HS or here about HS. But there is

so much coming y'all. The growth in therapies is faster than anything I've seen. Now, given the opportunity to tackle exactly what was at play for so many years, ATHENA is determined to connect her symptoms to real solutions, finally finding a specialist to help treat the pain and include her in a clinical trial at the Penn State Hospital.

Athena was slowly coming to understand her options. Carlos continued to struggle with his own health issues, but he remained optimistic about Athena's journey learning to live with her HS. I had gotten an email from Penn State saying that they were having a support group for HS, and I was like, I don't really know if I want to go to this, you know, talk to my husband about it. I didn't go to like the first two meetings because

I was like, I don't know. I just a little afraid. Um. And then he wasn't nudging me to go, and he was like, just go to one. If you don't like it. You don't never have to go back, but just go to one meeting and see what it's about. And I went, And I have not stopped to the point now where I am the president of the organization that hosts these meetings.

What what did that open up for you? Emotionally? It took the isolation factor away, and it helped me start to feel more normal, right so hearing other patients tell their stories and they weren't exactly the same as mine, but there were similarities, and there were a lot of similarities. Hearing that made me feel more human. It made me

feel less bad about myself. You know, my floor activity always tended to pick up right before my cycle, my menstrual cycle, and so hearing other girls say that as well, like just starting to understand that a lot of the disease mechanisms that we're going on with my body were happening in other people. And then hearing, you know, learning

about how they cope with it mentally and physically. Through Hope for HS, an organization that supports patients and families who are affected by HS Diena found ammunition to fight

her symptoms. For so long, the widespread lumps, pain and scarring only ignited very real emotional pain and stigma, But through her work with the organization and her new friends, Athena was building a larger network of support for herself and connecting the community with rapidly growing solutions, including expert researchers like Dr Kirby and I remember the first real impactful experience I had with her. She asked me to come in and do an interview with her, and it

was super early in the morning. We were the only ones in her office, and she asked me a question right about how this disease affected, um my, my intimate life, and I just paused, right, and I'm like trying to hold it together because I have never admitted this to myself, to my husband. I wouldn't allow my thought processes to go there, you know. And I'm frozen. And she very kindly takes a box of tissues and slides it across

the desk and the tears just opened. Um that was when I knew I was in really good hands with her. As Athena discovers a growing community of people who understand her experience and an arsenal of answers to reprioritize comfort in her day to day life, Athena is faced with an unimaginable horror in her personal life. My husband passed in May of two thousand and twenty. UM. He was a diabetic and he went into kidney failure and so

he actually survived cardiac arrest twice. They were able to get him back, but after a couple of days in the hospital, we had we had to take him off of life support. I'm so sorry. Yeah, he was a forty We were married two days shy of eleven years when he passed, and we were together fifteen years old too. Other he was always my encouraging person, like he was my constant safe place. Carlos lived with me, and I couldn't hide what was going on like he saw it all.

He saw me throwing products on my HS that would make me scream like you know, he saw it all and he loved me through it all. After Carlos is passing, the HS community became more important than ever as Diena found herself channeling her grief into a new sense of purpose, propelled by her husband's memory. He was actually at the first speech that I ever did in New York. He

was really supportive. As I started to travel as an advocate, we found out that kind of by accident, that I'm a really good public speaker, and so I started writing speeches and giving speeches that they would ask me to go to these conferences and I would start speaking, and he was always such a champion of mine. Dr Kirby is another of Athena's champions. In front of hundreds of doctors. Athenis shows up, she talks through her story. She is

the only person who gets a standing ovation. Just people are roaring. The clapping is so loud. It was just incredible, and it made me realize that we sometimes have so little time in the room with somebody that we forget the story behind the person with that condition. Elizabeth is also pretty proud of her younger sister. You know, we talk a lot about people with resilience, self determination. You know, she's somebody who's she's not gonna take it going down

and she's not going to quit. So I think that spirits wonderful and also kind of envious because she travels like everywhere all the time. So I'm like, man, I'm so jealous to go to Dallas, to go to Florida. I don't think there's ever going to be a single pill that I take that's gonna magically turn this off. The operating theory is joining medical and surgical treatment together

to manage this disease. I've had a total of four of those procedures what they call a staged excision, and so I still have quite a bit of HS left on my body. Um, I want to get it to a very very manageable state. And now that I have the proper care and the proper avenues for that, I'm really hopeful for it. But there's there's a lot of patients that are not where I'm at, and we need to get them there because so many people are suffering

in silence. Yeah, and now I'm fighting for these patients who are still somewhere in that seven to ten year road of diagnosis, who are suffering immensely, who are paying big time consequences for something that their body is doing to them. What do you want other people who may be struggling in silence or without a diagnosis yet in terms of HS, what do you want them to know? It's not your fault. It's not your fault. It's not your fault. It's not your fault. I can't emphasize this

is enough. This is something that your body does. And I know that if you're out there listening right now and you feel really bad about your body, I'm really sorry. There's a medical reason for what is going on, and you have a medical condition that requires medical care. It's not something that you are doing to your body. This isn't an unknown form of self sabotage or anything like this. Your body is sick and you need care. Athenis story

is of both extreme adversity and moving resilience. Through the education and advocacy of her work today, she's gone on to build priceless relationships and lasting change for the larger HS community. It's with these peers and through the meetings that Athena has found new hope for the future, and she embraces her new role with enthusiasm and purpose. My name is Athena Gearbolini, and for fifteen years I struggled

with disease known as hydrogenitis supurativa. To find out more information, visit the HS Foundation at HS dash foundation dot org and Hope for HS at Hope for HS dot org. On the next episode of Symptomatic, we heard the story of Zach Dobek, and eleven year old who loved pizza, sports, and going fishing with his dad until an incident at

a baseball game changed his life forever. If we had said yes, like the honest to God truth is that I think he would have died in that bed that night as an illness quickly takes hold and wreaks havoc on his body. It's a race against the clock to figure out what's happening and to save Zach's life. Symptomatic a Medical Mystery Podcast is an original podcast from I Heeart Radio. Our show was hosted by me Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of

post Production is James Foster. Our producers are Sierra Kaiser and John Irwin.