House Calls - Case #02 Athena

Summary

Symptomatic: A Medical Mystery Podcast - Episode Summary Episode: House Calls - Case #02 Athena
Release Date: October 29, 2024
Host: Lauren Bright Pacheco
Guest: Athena Gier Bellini

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Introduction: Revisiting Athena's Journey

In the second episode of the "House Calls" series, host Lauren Bright Pacheco reconnects with Athena Gier Bellini, a long-time listener who previously shared her harrowing journey with a chronic, often misunderstood skin condition known as hidradenitis suppurativa (HS). This episode delves into Athena's experiences over the past two years, highlighting her significant health improvements, advocacy efforts, and personal triumphs.

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Athena's Initial Struggle and Misdiagnosis

Athena's battle with HS began during her early teenage years. At the onset of puberty, around age 13 or 14, she started noticing persistent pimples between her thighs and a few in her armpits. Despite seeking medical attention at 21, Athena faced misdiagnosis and misunderstanding from healthcare professionals.

[00:06] Athena Gier Bellini: "For 15 years I struggled with a disease known as hidradenitis suppurativa... I started noticing these tiny little pimples appear between my thighs."

Her initial diagnosis was a perianal abscess, where the attending physician attributed her condition to poor hygiene— a misconception that not only delayed proper treatment but also inflicted emotional distress.

[00:21] Athena Gier Bellini: "The doctor told me that what I had was a perianal abscess... caused by poor hygiene..."

This erroneous diagnosis perpetuated feelings of shame and isolation, exacerbating Athena's struggle with her condition.

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Emotional Impact and Isolation

The misdiagnosis had profound emotional ramifications for Athena. She vividly describes the torment of watching her body change uncontrollably, feeling betrayed by both her own body and the medical system meant to help her.

[01:06] Athena Gier Bellini: "It was watching my body start to deform by itself... I couldn't do anything to stop it."

Athena's inability to receive a correct diagnosis until much later in her life intensified her sense of isolation and internalized guilt, making her hesitant to discuss her condition even after marriage.

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Return to Medical Care and Correct Diagnosis

A decade later, Athena's concerns escalated when her husband became seriously ill and immunocompromised. Fearing that her undiagnosed condition could endanger him, she returned to medical care after seven years of silence.

[01:43] Athena Gier Bellini: "I was worried I would expose him to risk because of my so-called infections."

During this visit, Athena encountered a younger, more knowledgeable doctor who correctly identified her condition as hidradenitis suppurativa.

[02:29] Athena Gier Bellini: "He takes a look at my armpit and he says that's not MRSA, that's hidradenitis suppurativa."

This accurate diagnosis marked a turning point in Athena's journey, providing her with the clarity and validation she had long sought.

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House Calls Update: Athena’s Current Health

In this segment of "House Calls," Athena shares her remarkable progress since the initial episode aired in 2022. She reports being in the best health of her life, both physically and emotionally, a testament to her resilience and effective treatment regimen.

[03:07] Athena Gier Bellini: "I'm happy to report that I'm in the best health, probably of my life."

Athena's positive demeanor is evident as she discusses her improved well-being and the joy her dog, Homer, continues to bring to her life.

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Advocacy and Community Impact

Athena has channeled her experiences into advocacy, striving to educate both patients and the general public about HS. Her efforts focus on creating safe spaces for individuals to share their stories, thereby fostering a supportive community.

[07:24] Athena Gier Bellini: "A lot of it is connecting with patients... being brave enough to be the first person to say, this is what's going on with my body."

Her advocacy highlights the importance of storytelling in medical communities, emphasizing that personal narratives can bridge the gap between clinical knowledge and patient empathy.

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Listener Feedback and Impact

The episode features a heartfelt letter from Cheryl, a listener whose life was profoundly impacted by Athena's story. Cheryl recounts how the episode not only validated her own struggles with HS but also strengthened her relationship with her mother.

[10:25] Lauren Bright Pacheco: "She said... 'Athena's story reminded me that no one is truly alone in this battle... it brought us closer together.'"

Athena expresses deep emotional resonance with Cheryl's message, acknowledging the shared experiences that bind the HS community.

[11:43] Athena Gier Bellini: "Cheryl, that's amazing... I think we're worried that people aren't going to fully empathize with what we're going through."

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Athena's Progress and Treatment

Athena provides an update on her medical treatment, sharing that a combination of medications—including a new biologic and spironolactone—has significantly reduced her HS symptoms, currently rating them at a 2 out of 10.

[13:29] Athena Gier Bellini: "I am on a combination of medications... it put me into remission."

Her proactive approach continued with surgical interventions to remove residual HS-affected areas, further contributing to her improved health status.

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Personal Achievements and Future Outlook

Beyond her medical triumphs, Athena has achieved significant personal milestones, including losing 125 pounds. This weight loss has not only enhanced her physical mobility and energy levels but has also revitalized her social life, enabling her to engage in activities she previously found exhausting.

[14:23] Athena Gier Bellini: "I've lost 125 pounds. I have the ability to move my body now in ways that I hadn't."

Athena describes this transformation as a "regeneration of myself," free from the debilitating chains of depression and chronic illness.

[14:55] Athena Gier Bellini: "It feels like a regeneration of myself without even like the chains of depression."

Her newfound confidence empowers her to lead a fulfilling life, actively participating in adventures and fostering deeper connections with friends and family.

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Conclusion: Inspiring Resilience and Advocacy

Lauren commends Athena for her bravery, honesty, and the significant impact her story has had on listeners and the HS community at large.

[15:59] Lauren Bright Pacheco: "Thank you for being one of those individual voices who... has given voice to so many others."

Athena reflects on the power of storytelling in medical advocacy, emphasizing the importance of authentic narratives in fostering understanding and connection.

[17:02] Athena Gier Bellini: "The power of storytelling and hearing people speak their truth is also really inspiring to me."

As the episode concludes, both host and guest celebrate Athena's inspiring journey, underscoring the transformative power of resilience, community support, and effective medical care.

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Key Takeaways

• Delayed Diagnosis and Misconceptions: Athena's initial experiences highlight the challenges patients face when chronic conditions like HS are misunderstood or misdiagnosed.

• Emotional Toll of Chronic Illness: The episode underscores the significant mental health impacts, including feelings of shame, guilt, and isolation.

• Importance of Accurate Diagnosis: Athena's story emphasizes the critical need for knowledgeable healthcare professionals who can accurately identify and treat chronic illnesses.

• Advocacy and Community Support: Athena's transition into advocacy illustrates how sharing personal stories can empower others, reduce stigma, and foster supportive communities.

• Personal Resilience and Transformation: Her journey showcases the potential for profound personal growth and improved quality of life through effective treatment and lifestyle changes.

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This episode of "Symptomatic: A Medical Mystery Podcast" serves as a powerful testament to the resilience of individuals battling chronic illnesses and the vital role of community and advocacy in their healing journeys. Athena Gier Bellini's story not only illuminates the complexities of living with hidradenitis suppurativa but also inspires listeners to seek understanding, support, and effective medical care.

Transcript

[Lauren Bright Pacheco]

Ruby.

[Athena Gier Bellini]

My name is Athena Gier Bellini. And for 15 years I struggled with a disease known as hydradenitis suppurativa. So right around puberty, like 13, 14, I started noticing these tiny little pimples appear in between my thighs. My underwear line, I had a couple in my armpits. So at 21, one day I was having this kind of growing pain. 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. And he looked at me straight in the eyes and said, perianal abscesses are caused by poor hygiene and if you want to stop them from happening again, you need to take better care of yourself.

[Lauren Bright Pacheco]

A decade goes by and Athena still doesn't know or what's happening to her body.

[Athena Gier Bellini]

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. No matter what I changed in my life. It was just becoming its own thing on my body. I got married, but I didn't talk about it with anyone.

[Lauren Bright Pacheco]

But when her husband fell seriously ill and immunocompromised, Athena worried she would expose him to risk because of her so called infections. That's what made her return to the doctor for the first time in seven years.

[Athena Gier Bellini]

So the first doctor visit that I went to, the doctor takes a look at it and says it's mrs, which is some sort of infection. But he gives me a prescription and he says if this doesn't clear up in five days, come back. And so I went back in five days because 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 Doogie Howser reference. He looked so young. He was a baby and had just probably graduated medical school and you know, had just gotten a more up to date education. And so he takes a look at my armpit and he says that's not mrsa, that's hydrodynitis suppurativa.

[Lauren Bright Pacheco]

Welcome to House Calls. I'm Lauren Bright Pacheco. On these special segments, we'll check in with friends from former symptomatic episodes for updates on their health and lives since we last connected. Hey, Athena.

[Athena Gier Bellini]

Hi.

[Lauren Bright Pacheco]

So good to see you.

[Athena Gier Bellini]

Good to see you too, Lauren. I'm so excited to be back here.

[Lauren Bright Pacheco]

I am so excited to see you. I can't believe it's been this long. You were our second episode. It was 2022.

[Athena Gier Bellini]

Yeah.

[Lauren Bright Pacheco]

How have you been?

[Athena Gier Bellini]

I've been so good. It's really good to be able to do this follow up from such a good place in my life, both physically and emotionally. I'm happy to report that I'm in the best health, probably of my life.

[Lauren Bright Pacheco]

I can tell. You're glowing. You are just radiating happiness. It's wonderful to see.

[Athena Gier Bellini]

Thank you.

[Lauren Bright Pacheco]

How is Homer?

[Athena Gier Bellini]

He's good. He's in a crate behind me because if I didn't do that, he would also be participating in this podcast. But he's seven now, and he is just as goofy and fun loving as he's ever been.

[Lauren Bright Pacheco]

So anybody who does not remember Homer from the previous episode, he is a basset hound and the name is a nod to both your Greek heritage and the Simpsons.

[Athena Gier Bellini]

Yeah.

[Lauren Bright Pacheco]

Which you can't get better than that.

[Athena Gier Bellini]

Right.

[Lauren Bright Pacheco]

So gonna give anybody who didn't listen to your episode a chance to pause and go back and listen before they hear the update. But I just want to explain that you started exhibiting symptoms when you were just entering puberty and that you diagnosed many years later with hydradenitis superativa, or hs. And it's a chronic inflammatory disease that attacks skin cells, causing inflammation and rashes on the skin. There's still a lot that's unknown. And because the symptoms can mimic other skin conditions, namely cystic acne, it's often overlooked or goes undiagnosed. Can you just share a quick recap of how long it took you to get your diagnosis?

[Athena Gier Bellini]

Sure. So if we count initial symptoms starting at puberty, that was probably like 11 to 13 and was formally diagnosed at 28. Symptoms really kicked in right when I was around 21, like the most noticeable one. And where I got my first misdiagnosis. The first time I'd ever seen a doctor about this, 15 years, I would say from initial onset, but seven years from the time I'd first received, you know, medical care and then a misdiagnosis.

[Lauren Bright Pacheco]

You know, what resonates so deeply with going back and listening to your episode is the amount of shame and guilt you internalized from the onset of symptoms.

[Athena Gier Bellini]

Yeah. And that. That only reinforces internal feelings that you're already having. It pushes you further into isolation. It makes you feel like it just confirms almost like your worst fears about what's going on with your body. And it. It's so hard to undo that. Even to this day, when I'm talking about it with people, I know full well the medical mechanisms that go on to this disease, I stay very educated Very up to date with the research. I know that this is not my fault, but I still, almost initially, when I'm explaining it to people who don't know, almost get a little defensive because of that reinforcement of the misdiagnosis that I had.

[Lauren Bright Pacheco]

And it becomes so cruel because you're feeling, in a very isolated way, singled out and betrayed by your body. And then you're being told that you've betrayed your body by not taking care of it properly. And it becomes just an emotionally grueling cycle, I should think.

[Athena Gier Bellini]

Yeah, it was difficult and really depressing. And you start to understand, when we look at the mental health tolls that this takes on patients, you really understand that, because, again, it's your worst fears being confirmed by somebody with a medical degree. Like, this is not a random person who is uneducated about the human body just making assumptions. This is someone that you consider to be knowledgeable confirming your fears. It's really hard to undo that. It's really, really hard to undo that.

[Lauren Bright Pacheco]

You are doing some heavy lifting to undo it, though. Can you just talk to me a little bit about stepping into advocacy for other people who are dealing with hs?

[Athena Gier Bellini]

I think that's one of the most empowering things that I've been able to do, is really talking to people. So in the work that we do as advocates, a lot of it is connecting with patients. And most of the time, it's just being brave enough to be the first person to say, this is what's going on with my body. Because the minute we can, as advocates, say, hey, this has been my experience. This is what happened. Can you tell me about yours? We kind of free them by being the first ones to do it. And now they can connect with that. And now they're like, this is a safe environment. This is why I'm such a proponent of the support group model and the magic that gets done in the work of the support groups. But even just talking to patients and talking to people in general in advocacy, the biggest and the hardest thing you can do is to just open up and tell your authentic story.

[Lauren Bright Pacheco]

You know, I've always believed that vulnerability ultimately is a superpower. And your story illustrates that, honestly. More so than any I think we've told, because you went from feeling isolated and horrified, trapped in what felt like a living nightmare in your bathroom, to speaking openly about it in front of conferences. And I'd love to know if you've had any kind of response to the episode that we taped together, because I just thought your authenticity and your honesty and your bravery was staggering.

[Athena Gier Bellini]

Well, thank you for that. It was a really freeing and liberating experience for me as well. The feedback that we've gotten from within the HS community has been great. So many people have listened to it. I've gotten emails and responses from it. I was so fortunate to be given this platform to just come on and really, really kind of walk the public through my story. Right. Because when I speak, a lot of these conferences, they are geared toward dermatology and the dermatology community. And I get that it's very much needed. I've done some really cool things, you know, in between when we recorded to now. And I love educating the community, but the general public as well, people who might have this disease or think they have this disease or even have something similar, can listen to this story and find something to connect with. And that has been amazing to look back now and say, of all the work that I've done, I've been able to do this as well. The feedback has just been. Has been really good and really positive. Even the comments that people have left on the podcast were pretty amazing.

[Lauren Bright Pacheco]

Absolutely. You know, I don't know if you saw this one, but there was a doctor who said that he diagnosed somebody with HS after having listened to the episode. There was also an email that we received from a woman named Cheryl. If you don't mind, I'd love to read it to you.

[Athena Gier Bellini]

Yeah.

[Lauren Bright Pacheco]

She said that after listening to the episode featuring Athena, who shared her journey with hs. As someone who unknowingly lived with HS for so long, Athena's story hit me hard, to say the least. For nearly 10 years, I felt isolated and misunderstood, not knowing the name of the condition that was literally derailing my life. Athena's story reminded me that no one is truly alone in this battle. It lit a sense of understanding that has been missing for far too long. Her bravery in discussing the physical and emotional toll of HS has empowered me to navigate sharing my experience more openly, too. After listening to the episode, I shared it with my mom. She had struggled to believe and understand what I had been through for many, many years. Hearing the similarities in Athena's story helped her see the reality of living with HS from a wider point of view. And I can pretty confidently say it brought us closer together. I think it was a moment of validation and connection that we both needed. This episode is a must listen for anybody dealing with chronic illness. Thank you, Athena, for your bravery and for helping me feel seen and understood. Best, Cheryl.

[Athena Gier Bellini]

Oh, my. It's kind of hard to fight back the tears with that one. Cheryl, that's amazing. And I'm so honored that this has done that for you and for your mother. I can actually relate to that. I've told my friends and family about this, but my father listened to this, the episode, and I'd never opened up with him in the way that I kind of had with this podcast. Right. I'd never gone into the details, and my dad actually cried listening to this episode. And so, yeah, Cheryl, I. It's so hard, right, to have gone through this. And then I think we're worried, right, that people aren't going to necessarily fully connect with or, like, you know, in our inner circles, fully empathize with what we're going through because we're so used to being minimized with this condition and with chronic illness in general. People don't take us seriously when we say, I can't get out of bed this morning. Like, I had a hard time brushing my hair this morning. Everything I do is exhausting. My energy levels are just depleted. Sometimes we just don't even bother opening up to the people that we love because we're just on top of everything that we're going through. We don't want to argue with them. We don't want to have to continually explain and continually defend as well. So, Cheryl, thank you so much for sharing. I'm so glad that this was able to help you.

[Lauren Bright Pacheco]

I mean, it's a wonderful, honestly, gift that you've given people your bravery and your courage and being so open and honest. And again, it's a superpower, and you're a superhero. And talk to me a little bit about your ongoing progress.

[Athena Gier Bellini]

So I am very happy to report that my HS is probably the best it's been in my entire life. I am on a combination of medications. It's a new biologic. The combination of the biologic and the spironolactone seemed to take my HS to like, a 2 out of 10, right? Like 10 being, worst one being, you know, nothing. It seemed to really take it there. We added the birth control component, and it put me into remission.

[Lauren Bright Pacheco]

Athena, that's wonderful.

[Athena Gier Bellini]

Yeah. So I've had a bunch of surgeries to remove the hs, and there's still a little bit left. But I actually recently went in because I was like, I just want to get the last of this taken out and taken care of. And they had said that I'm so well medically managed that there was no reason to go back in and to remove what was left because it's the best it's ever been.

[Lauren Bright Pacheco]

What are some new things that have changed since we last spoke? What are some new interesting things you're taking on?

[Athena Gier Bellini]

So I've lost 125 pounds.

[Lauren Bright Pacheco]

Wow, Athena.

[Athena Gier Bellini]

Yeah, that's one of the coolest things is just I have the ability, right, to move my body now in ways that I hadn't. And I have energy levels that I didn't quite have before because my body is no longer busy fighting something. And so now going to the doctor really isn't all that stressful.

[Lauren Bright Pacheco]

I'm so happy. And I'm sure that your social life has expanded with these new ventures as well.

[Athena Gier Bellini]

Yeah, I do so much now with my friends and with my family. I'm the one now that's like, let's go hiking this weekend or let's do some crazy adventure. Because I can move my body both with this disease and remission and the combined weight loss. It feels like a regeneration of myself without even like the chains of depression. I feel better and I feel more confident within myself to go out and finally live the life that I've always wanted to live or really in creating a life that fulfills me.

[Lauren Bright Pacheco]

I can't tell you how happy I am for you and what a wonderful two year check in this has been. So much has happened and I'm so happy that you are on such a wonderful path. And so thank you so much for sharing your voice and for agreeing to check back in with us because you're inspiring so many more others to find their own and that's a wonderful thing.

[Athena Gier Bellini]

I'm so grateful for this platform and the opportunity to tell my story. People like Cheryl and Hannah, like that was the whole goal was to reach out to patients and to educate the general community about this disease. It was hard, but I think at the end of the day, it's easier to connect with a real life story, which is what your entire series did. As opposed to just throwing out medical explanations or literature, we are adding the human component to it and people will find connection. You know, I listened to the other episodes as well in that first series, and I'm now just starting to get into the second. And the power of storytelling and hearing people speak their truth is also really inspiring to me. You guys have done a great job with allowing patients to really speak their truth and in an honest and meaningful, impactful way.

[Lauren Bright Pacheco]

I know my entire team appreciates that because that's why we're doing this. And so thank you for being one of those individual voices who again has given voice to so many others. I wish you so much continued success and I so look forward to our next update to see what you're up to then anytime on next week's episode of Symptomatic. Scott Collins was in the best shape of his life leading up to his 40th birthday when he noticed a small bump on his nose. He initially ignored it until the symptoms spiraled into a life threatening condition leading to an extended stay in the icu. They're wiring me up and cutting my shirt off and getting me on a gurney. You've got an ambulance sirens going and it was frightening and that was the moment I was like this is it. This is where I go. This has been house calls. Thanks for listening and we would love to hear from you too. You can email us@ symptomaticheartmedia.com with thoughts about other episodes or to share a medical mystery of your own. Until next time, be well.