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

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.

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.

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.

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.

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.

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.

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."

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.

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.

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.

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.

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.