October 17, 2022 • 30 mins
As a young teenager, Athena began experiencing pimple-like abscesses in various areas of her body. For years, doctors attributed the painful lesions to poor hygiene, shaming Athena into internalizing and enduring her chronic inflammatory condition in silence. Pushing through pain, embarrassment and self-blame, Athena meets a young doctor who finally gives her hope - and a name - for her disorder.
*
*
*
*
*
*
************ SPOILER ALERT BELOW ************
If you’re looking for more information on Hidradenitis Suppurativa, you can check out the Hidradenitis Suppurativa Foundation by heading to HS-Foundation.org. You can also explore Athena Gierbolini’s work with Hope for HS.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
It was watching my body start to deform by itself,
like it was doing it to itself, and I couldn't
do anything to stop it. The most difficult part is
the pain, the pain and more pain. We're not inside
their body, so we don't know exactly what they're feeling
and what they're going through. It takes a lot of courage.
(00:27):
You don't know if it's going to spread. And so
I was like, this is absolute fear. 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
(00:51):
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.
(01:29):
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
(01:51):
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
(02:12):
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
(02:38):
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
(03:00):
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
(03:21):
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
(03:44):
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
(04:06):
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
(04:27):
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
(04:47):
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
(05:08):
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
(05:29):
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.
(05:53):
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,
(06:17):
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
(06:38):
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
(07:00):
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
(07:22):
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
(07:44):
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,
(08:09):
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
(08:29):
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
(08:52):
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
(09:14):
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,
(09:37):
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
(10:00):
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,
(10:22):
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
(10:42):
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,
(11:07):
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
(11:29):
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
(11:52):
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,
(12:14):
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
(12:34):
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
(13:04):
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
(13:26):
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
(13:46):
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
(14:08):
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
(14:28):
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
(14:49):
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
(15:12):
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.
(15:32):
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
(15:53):
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
(16:14):
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
(16:36):
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
(16:56):
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,
(17:19):
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,
(17:42):
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
(18:03):
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
(18:25):
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
(18:48):
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,
(19:11):
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
(19:33):
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.
(19:58):
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
(20:19):
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
(20:40):
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
(21:07):
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
(21:30):
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.
(21:50):
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
(22:11):
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
(22:33):
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
(22:53):
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,
(23:14):
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
(23:34):
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
(23:57):
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
(24:18):
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
(24:38):
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.
(25:00):
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,
(25:29):
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
(25:52):
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
(26:16):
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
(26:37):
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
(26:57):
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
(27:19):
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
(27:41):
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
(28:02):
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
(28:24):
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
(28:49):
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
(29:13):
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.
(29:35):
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
(29:56):
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
(30:17):
post Production is James Foster. Our producers are Sierra Kaiser
and John Irwin.
It was watching my body start to deform by itself,
like it was doing it to itself, and I couldn't
do anything to stop it. The most difficult part is
the pain, the pain and more pain. We're not inside
their body, so we don't know exactly what they're feeling
and what they're going through. It takes a lot of courage.
(00:27):
You don't know if it's going to spread. And so
I was like, this is absolute fear. 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
(00:51):
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.
(01:29):
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
(01:51):
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
(02:12):
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
(02:38):
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
(03:00):
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
(03:21):
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
(03:44):
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
(04:06):
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
(04:27):
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
(04:47):
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
(05:08):
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
(05:29):
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.
(05:53):
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,
(06:17):
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
(06:38):
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
(07:00):
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
(07:22):
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
(07:44):
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,
(08:09):
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
(08:29):
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
(08:52):
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
(09:14):
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,
(09:37):
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
(10:00):
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,
(10:22):
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
(10:42):
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,
(11:07):
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
(11:29):
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
(11:52):
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,
(12:14):
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
(12:34):
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
(13:04):
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
(13:26):
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
(13:46):
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
(14:08):
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
(14:28):
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
(14:49):
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
(15:12):
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.
(15:32):
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
(15:53):
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
(16:14):
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
(16:36):
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
(16:56):
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,
(17:19):
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,
(17:42):
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
(18:03):
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
(18:25):
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
(18:48):
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,
(19:11):
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
(19:33):
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.
(19:58):
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
(20:19):
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
(20:40):
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
(21:07):
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
(21:30):
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.
(21:50):
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
(22:11):
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
(22:33):
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
(22:53):
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,
(23:14):
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
(23:34):
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
(23:57):
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
(24:18):
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
(24:38):
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.
(25:00):
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,
(25:29):
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
(25:52):
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
(26:16):
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
(26:37):
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
(26:57):
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
(27:19):
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
(27:41):
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
(28:02):
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
(28:24):
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
(28:49):
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
(29:13):
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.
(29:35):
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
(29:56):
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
(30:17):
post Production is James Foster. Our producers are Sierra Kaiser
and John Irwin.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Nikki Glaser Podcast
Every week comedian and infamous roaster Nikki Glaser provides a fun, fast-paced, and brutally honest look into current pop-culture and her own personal life.