Speaker 1: My name is Athena gier Bellini, and for fifteen years
Speaker 1: I struggled with a disease known as hydrogenitis superativa. So
Speaker 1: right around puberty, like thirteen fourteen, I started noticing these
Speaker 1: tiny little pimples appear in between my thighs, my underwear line.
Speaker 1: I had a couple in my armpits. Okay, So at
Speaker 1: twenty one one day I was having this kind of
Speaker 1: growing pain. I had to go to a doctor because
Speaker 1: it just wasn't going away. And he told me that
Speaker 1: what I had was a pery anal abscess. And he
Speaker 1: looked at me straight in the eyes and said, pery
Speaker 1: anal abscesses are caused by poor hygiene, and if you
Speaker 1: want to stop them from happening again, you need to
Speaker 1: take better care of yourself.
Speaker 2: A decade goes by and Athena still doesn't know or
Speaker 2: understand what's happening to her body.
Speaker 1: It was watching my body start to deform by itself,
Speaker 1: like it was doing it to itself, and I couldn't
Speaker 1: do anything stop it. No matter why changed in my life,
Speaker 1: it was just becoming its own thing on my body.
Speaker 1: I got married, but I didn't talk about it with
Speaker 1: anyone but when her husband fell seriously ill and immuno compromised,
Speaker 1: Athena worried she would expose him to risk because of
Speaker 1: her so called infections. That's what made her return to
Speaker 1: the doctor for the first time in seven years. So
Speaker 1: the first doctor visit that I went to, the doctor
Speaker 1: takes a look at it and says it's mersin, which
Speaker 1: is some sort of infection. But he gives me a
Speaker 1: prescription and he says, if this doesn't clear up in
Speaker 1: five days, come back. And so I went back in
Speaker 1: five days because it was exactly the same as it
Speaker 1: was before, but this time I got a brand new doctor.
Speaker 1: And I always liked to joke and like give the
Speaker 1: Douey Houser reference. He looked so young, he was a
Speaker 1: baby and had just probably graduated medical school and you know,
Speaker 1: had just gotten a more up to date education. And
Speaker 1: so he takes a look at my armpit and he says,
Speaker 1: that's not RSA, that's hydrodinitis superativa.
Speaker 2: Welcome to House Calls. I'm Lauren bried Pacheco. On these
Speaker 2: special segments, we'll check in with friends from former Symptomatic
Speaker 2: episodes for updates on their health and live Since we
Speaker 2: last connected.
Speaker 1: Want. Hey Athena, Hi, so good to see you. Good
Speaker 1: to see you too, Lauren. I'm so excited to be
Speaker 1: back here.
Speaker 2: I am so excited to see you. I can't believe
Speaker 2: it's been this long. You were our second episode. It
Speaker 2: was twenty twenty two. Yeah, how have you been.
Speaker 1: I've been so good. It's really good to be able
Speaker 1: to do this follow up from such a good place
Speaker 1: in my life, both physically and emotionally. I'm happy to
Speaker 1: report that I'm in the best health, probably of my life.
Speaker 2: I can tell You're glowing. You are just radiating happiness.
Speaker 2: It's wonderful to see.
Speaker 1: Thank you.
Speaker 2: How is Homer.
Speaker 1: He's good. He's in a crate behind me because if
Speaker 1: I didn't do that, he would also be participating in
Speaker 1: this podcast. But he's seven now and he is just
Speaker 1: as goofy and fun loving as he's ever been.
Speaker 2: So anybody who does not remember Homer from the previous episode,
Speaker 2: he is a basset hound and the name is a
Speaker 2: nod to both your Greek heritage and the Simpsons. Yeah,
Speaker 2: which you can't get better than that, right, So I'm
Speaker 2: going to give anybody who didn't listen to your episode
Speaker 2: a chance to pause and go back and listen before
Speaker 2: they hear the update. But I just want to explain
Speaker 2: that you started exhibiting symptoms when you were just entering puberty,
Speaker 2: and that you were diagnosed many years later with Hydrodenidis
Speaker 2: superativa or HS, and it's a chronic inflammatory disease that
Speaker 2: attacks skin cells, causing inflammation and rastures on the skin.
Speaker 2: There's still a lot that's unknown, and because the symptoms
Speaker 2: can mimic other skin conditions, namely cystic acne, it's often
Speaker 2: overlooked or goes undiagnosed. Can you just share a quick
Speaker 2: recap of how long it took you to get your diagnosis?
Speaker 1: Sure, So, if we count initial symptoms starting at puberty,
Speaker 1: that was probably like eleven to thirteen and is formally
Speaker 1: diagnosed at twenty eight. Symptoms really kicked in right when
Speaker 1: I was around twenty one, like the most noticeable one
Speaker 1: and where I got my first misdiagnosis the first time
Speaker 1: I'd ever seen a doctor. About this fifteen years I
Speaker 1: would say from initial onset, but seven years from the
Speaker 1: time I'd first received medical care and then a misdiagnosis.
Speaker 2: You know what resonates so deeply with going back and
Speaker 2: listening to your episode is the amount of shame and
Speaker 2: guilt you internalized from the onset of symptoms.
Speaker 1: Yeah, and that only reinforces internal feelings that you're already having.
Speaker 1: It pushes you further into isolation. It makes you feel
Speaker 1: like it just confirms almost like your worst fears about
Speaker 1: what's going on with your body, and it's so hard
Speaker 1: to undo that. Even to this day, when I'm talking
Speaker 1: about it with people, I know full well the medical
Speaker 1: mechanisms that go on to this disease. I stay very
Speaker 1: educated rake to date with the research. I know that
Speaker 1: this is not my fault, but I still, almost initially
Speaker 1: when I'm explaining it to people who don't know, almost
Speaker 1: get a little defensive because of that reinforcement of the
Speaker 1: misdiagnosis that I had.
Speaker 2: And it becomes so cruel because you're feeling, in a
Speaker 2: very isolated way, singled out and betrayed by your body,
Speaker 2: and then you're being told that you've betrayed your body
Speaker 2: by not taking care of it properly, and it becomes
Speaker 2: just an emotionally grueling cycle. I should think, Yeah.
Speaker 1: It was difficult and really depressing, and you start to
Speaker 1: understand when we look at the mental health tolls that
Speaker 1: this takes on patience. You really understand that, because again,
Speaker 1: it's your worst fears being confirmed by somebody with a
Speaker 1: medical degree, Like this is not a random person who
Speaker 1: is uneducated about the human body just making assumptions. This
Speaker 1: is someone that you consider to be knowledgeable confirming your fears.
Speaker 1: It's really hard to undo that. It's really really hard
Speaker 1: to undo that.
Speaker 2: You are doing some heavy lifting to undo it, though.
Speaker 2: Can you just talk to me a little bit about
Speaker 2: stepping into advocacy for other people who are dealing with HS.
Speaker 1: I think that's one of the most empowering things that
Speaker 1: I've been able to do, is really talking to people.
Speaker 1: So in the work that we do as advocates, a
Speaker 1: lot of it is connecting with patients, and most of
Speaker 1: the time it's just being brave enough to be the
Speaker 1: first person to say, this is what's going on with
Speaker 1: my body. Because the minute we can as advocates say hey,
Speaker 1: this has been my experience, this is what happened. Can
Speaker 1: you tell me about yours, we kind of free them
Speaker 1: by being the first ones to do it, and now
Speaker 1: they can connect with that and now they're like, this
Speaker 1: is a safe environment, this is why I'm such a
Speaker 1: proponent of the support group model and the magic that
Speaker 1: gets done in the work of the support groups, but
Speaker 1: even just talking to patients and talking to people in
Speaker 1: general in advocacy, the biggest and the hardest thing you
Speaker 1: can do is to just open up and tell your
Speaker 1: authentic story.
Speaker 2: You know, I've always believed that vulnerability ultimately is a superpower,
Speaker 2: and your story illustrates that, honestly, more so than any
Speaker 2: I think we've told, because you went from feeling isolated
Speaker 2: and horrified, trapped in what felt like a living nightmare
Speaker 2: in your bathroom, to speaking openly about it in front
Speaker 2: of conferences. And I'd love to know if you've had
Speaker 2: any kind of response to the episode that we tape together,
Speaker 2: because I just thought your authenticity and your honesty and
Speaker 2: your bravery was staggering.
Speaker 1: Well, thank you for that. It was a really freeing
Speaker 1: and liberating experience for me as well. The feedback that
Speaker 1: we've gotten from within the HS community has been great.
Speaker 1: So many people have listened to it. I've gotten emails
Speaker 1: and responses from it. I was so fortunate to be
Speaker 1: given this platform to just come on and really really
Speaker 1: kind of walk the public through my story. Right, because
Speaker 1: when I speak of a lot of these conferences, they
Speaker 1: are geared toward dermatology and the dermatology community, and I
Speaker 1: get that it's very much in needed. I've done some
Speaker 1: really cool things, you know, in between when we recorded
Speaker 1: to now, and I love educating the community, but the
Speaker 1: general public as well. People who might have this disease
Speaker 1: or think they have this disease, or even have something
Speaker 1: similar can listen to this story and find something to
Speaker 1: connect with. And that has been amazing to look back
Speaker 1: now and say of all the work that I done
Speaker 1: and been able to do this as well. The feedback
Speaker 1: has just been has been really good and really positive.
Speaker 1: Even the comments that people have left them on podcast
Speaker 1: were pretty amazing.
Speaker 2: Absolutely. You know, I don't know if you saw this one,
Speaker 2: but there was a doctor who said that he diagnosed
Speaker 2: somebody with HS after having listened to the episode. There
Speaker 2: was also an email that we received from a woman
Speaker 2: named Cheryl. If you don't mind, I'd love to read
Speaker 2: it to you.
Speaker 1: Yeah.
Speaker 2: She said that after listening to the episode featuring Athena,
Speaker 2: who shared her journey with HS. As someone who unknowingly
Speaker 2: lived with HS for so long, Athena's story hit me hard,
Speaker 2: to say the least. For nearly ten years, I felt
Speaker 2: isolated and misunderstood, not knowing the name of the condition
Speaker 2: that was literally derailing my life. Athena's story reminded me
Speaker 2: that no one is truly alone in this battle. It
Speaker 2: lid a sense of understanding that has been missing for
Speaker 2: far too long. Her bravery in discussing the physical and
Speaker 2: emotional toll of HS has empowered me to navigate sharing
Speaker 2: my experience more openly too. After listening to the episode,
Speaker 2: I shared it with my mom. She had struggled to
Speaker 2: believe and understand what I had been through for many,
Speaker 2: many years. Hearing the similarities in Athena's story helped her
Speaker 2: see the reality of living with HS from a wider
Speaker 2: point of view, and I can pretty confidently say it
Speaker 2: brought us closer together. I think it was a moment
Speaker 2: of validation and connection that we both needed. This episode
Speaker 2: is a must listen for anybody dealing with chronic illness.
Speaker 2: Thank you Athena for your bravery and for helping me
Speaker 2: feel seen and understood. Best Cheryl, Oh my, it's kind
Speaker 2: of hard to fight back to deals with that one.
Speaker 1: Cheryl. That's amazing and I am so honored that this
Speaker 1: has done that for you and for your mother. I
Speaker 1: can actually relate to that. I've told my friends and
Speaker 1: family about this, but my father listened to this the episode,
Speaker 1: and I'd never opened up with him in the way
Speaker 1: that I kind of had with this podcast, right, I'd
Speaker 1: never gone into the details. And my dad actually cried
Speaker 1: listening to this episode. And so, yeah, Cheryl, it's so
Speaker 1: hard right to have gone through this. And then I
Speaker 1: think we're worried right that people aren't going to necessarily
Speaker 1: fully connect with or, like you know, in our inner circles,
Speaker 1: fully empathize with what we're going through because we're so
Speaker 1: used to being minimized with this condition and with chronic
Speaker 1: illness in general. People don't take us seriously when we
Speaker 1: say I can't get out of bed this morning. I
Speaker 1: had a hard time brushing my hair this morning. Everything
Speaker 1: I do is exhausting. My energy levels are just depleted.
Speaker 1: Sometimes we just don't even bother opening up to the
Speaker 1: people that we love because we're just on top of
Speaker 1: everything that we're going through. We don't want to argue
Speaker 1: with them. We don't want to have to tenually explain
Speaker 1: and continually defend as well. So, Cheryl, thank you so
Speaker 1: much for sharing. I'm so glad that this was able
Speaker 1: to help you.
Speaker 2: I mean, it's a wonderful, honestly gift that you've given
Speaker 2: people your bravery and your courage in being so open
Speaker 2: and honest, and again it's a superpower and you're a superhero.
Speaker 2: And talk to me a little bit about your ongoing progress.
Speaker 1: So I am very happy to report that my AHS
Speaker 1: is probably the best to spend in my entire life.
Speaker 1: I am on a combination of medications. It's a new biologic.
Speaker 1: The combination of the biologic and the spernolacton seemed to
Speaker 1: take my HS to like a two out of ten, right,
Speaker 1: like ten being worst one being you know, nothing. It
Speaker 1: seemed to really take it there. We added the birth
Speaker 1: control component and it put me into remission athena.
Speaker 2: That's wonderful.
Speaker 1: Yeah. So I've had a bunch of surgeries to remove
Speaker 1: the AHS. They're still a little bit left. But I
Speaker 1: actually recently went in because I was like, I just
Speaker 1: want to get the last of this taken out and
Speaker 1: taken care of. And they had said that I'm so
Speaker 1: well medically managed that there was no reason to go
Speaker 1: back in and to remove what was left, because it's
Speaker 1: the best it's ever been.
Speaker 2: What are some new things that have changed since we
Speaker 2: last spoke. What are some new interesting things you're taking on.
Speaker 1: So I've lost one hundred and twenty five pounds, wow, Athena, Yeah,
Speaker 1: that's one of the coolest things is just I have
Speaker 1: the ability right to move my body now in ways
Speaker 1: that I hadn't and I have energy levels that I
Speaker 1: didn't quite have before because my body is no longer
Speaker 1: busy fighting something, and so now going to the doctor
Speaker 1: really isn't all that stressful.
Speaker 2: I'm so happy. And I'm sure that your social life
Speaker 2: has expanded with these new ventures as well.
Speaker 1: Yeah, I do so much now with my friends and
Speaker 1: my family. I'm the one now that's like, let's go
Speaker 1: hiking this weekend, or let's do some crazy adventure. Because
Speaker 1: I can move my body both with this disease and
Speaker 1: remission and the combined weight loss, it feels like a
Speaker 1: regeneration of myself without even like the chains of depression.
Speaker 1: I feel better and I feel more confident within myself
Speaker 1: to go out and finally live the life that I've
Speaker 1: always wanted to live, or really in creating a life
Speaker 1: that fulfills me.
Speaker 2: I can't tell you how happy I am for you
Speaker 2: and what a wonderful two year check in this has been.
Speaker 2: So much has happened, and I'm so happy that you
Speaker 2: are on such a wonderful path, and so thank you
Speaker 2: so much for sharing your voice and for agreeing to
Speaker 2: check back in with us, because you're inspiring so many
Speaker 2: more others to find their own and that's a wonderful thing.
Speaker 1: I'm so grateful for this platform and the opportunity to
Speaker 1: tell my story people like Cheryl and Hannah like that
Speaker 1: was the whole goal, was to reach out to patients
Speaker 1: and to educate the general community about this disease. It
Speaker 1: was hard, but I think at the end of the day,
Speaker 1: it's easier to connect with a real life story, which
Speaker 1: is what your entire series did. As opposed to just
Speaker 1: throwing out medical explanations or literature. We are adding the
Speaker 1: human component to it and people will find connection. You know.
Speaker 1: I listened to the other episodes as well in that
Speaker 1: first series, and I'm now just starting to get into
Speaker 1: the second and the power of storytelling and hearing people
Speaker 1: speak their truth is also really inspiring to me. You
Speaker 1: guys have done a great job with allowing patients to
Speaker 1: really speak their truths and in an honest and meaningful,
Speaker 1: impactful way.
Speaker 2: I know my entire team appreciates that, because that's why
Speaker 2: we're doing this, and so thank you for being one
Speaker 2: of those individual voices who again has given voice to
Speaker 2: so many others. I wish you so much continued success
Speaker 2: and I so look forward to our next update to
Speaker 2: see what you're up to then any time. On next
Speaker 2: week's episode of Symptomatic, Scott Colin was in the best
Speaker 2: shape of his life leading up to his fortieth birthday
Speaker 2: when he noticed a small bump on his nose. He
Speaker 2: initially ignored it until the symptom spiraled into a life
Speaker 2: threatening condition, leading to an extended stay in the ICU.
Speaker 3: They're wiring me up and cutting my shirt off and
Speaker 3: getting me on a journey. You've got an ambulance sirens
Speaker 3: going and it was frightening, and that was the moment
Speaker 3: I was like, this is it, this is where I go.
Speaker 2: This has been house calls. Thanks for listening and we
Speaker 2: would love to hear from you too. You can email
Speaker 2: us at Symptomatic at iHeartMedia dot com with thoughts about
Speaker 2: other episodes or to share a medical mystery of your own.
Speaker 2: Until next time, be well.