Podcast Summary: Symptomatic – Case #29: Cienna

Podcast: Symptomatic: A Medical Mystery Podcast
Host: Lauren Bright Pacheco
Episode: Case #29: Cienna
Date: November 25, 2025

Episode Overview

This episode of Symptomatic follows the journey of Sienna Dietrich, a vivacious and resilient 31-year-old who spent much of her life battling debilitating, mysterious medical symptoms. From childhood migraines and fainting spells to episodes of paralysis and progressing illness, Sienna's story is one of persistence and hope in the face of repeated medical misdiagnoses. Ultimately, the episode uncovers how a determined doctor, Dr. Betul Haripaglu, puts the puzzle pieces together for Sienna, leading to a diagnosis of periodic paralysis—and, later, the rare and life-threatening syndrome known as ROHHAD.

Key Discussion Points and Insights

Sienna’s Early Life and First Symptoms

• Chronic illness from infancy: Sienna recounts never remembering a time without migraines. As a baby, her mother noticed alarming symptoms like Sienna turning purple while sleeping, but these were dismissed by doctors.
  • "I don't remember a time when I didn't have migraines. I just thought everybody had terrible headaches almost every single day." (Sienna, 02:49)
• Assumed normalcy: She describes believing her symptoms—fainting on standing, heavy legs, impaired vision—were experiences everyone had.
• Dismissal by healthcare: Doctors repeatedly attributed her symptoms to normal childhood development or stress.

Navigating Adolescence with a Mystery Illness

• Escalating symptoms in high school: Sienna's migraines intensified, she experienced vision loss, and frequently fainted—especially during physically demanding activities like marching band practice.
  • Memorable incident: She lost her vision, navigated blindly back to the band room, and accidentally sat on Holly, who later became her closest friend.
    • "I lost my vision. It was all gone, and I did not know what was going on. Nothing like that had ever happened to me before in my life." (Sienna, 05:41)
• First misdiagnoses: Initially labeled as “complex migraines,” her diagnosis evolved to “epilepsy,” but treatments failed to resolve the symptoms.

College Years and Life-Saving Interventions

• Symptoms worsen: As a university music major, Sienna endured memory loss, daily episodes of vision loss, and frequent fainting.
  • She developed coping mechanisms—keeping a daily log to counter memory loss.
• Near-death experience: Her dog Triton saved her during a fainting episode in the shower, prompting a doctor to recommend a service dog.
• Dependence on others and emotional toll: Sienna’s health forced her mother to accompany her to college, and she required escorts due to liability concerns from frequent fainting.

Continuing the Diagnostic Odyssey

• Hospitalizations & further misdiagnoses: Doctors offered temporary explanations—from infections to a severe case of Guillain-Barré syndrome—before ultimately sending her home. It was only months later that a neurologist confirmed she had survived Guillain-Barré.
  • "I was in physical therapy. I was just trying everything I could, and it was just. It was terrifying." (Sienna, 15:50)
• Despair over lack of answers: Multiple specialists explored possibilities (mitochondrial disorders, genetic testing), but Sienna remained undiagnosed.

Breakthrough: The Power of Listening and Connection

• Enter Dr. Betul Haripaglu: Endocrinologist Dr. Haripoglu describes her approach as immersive listening, likening patient stories to a mystery novel. She acknowledges the gender and age bias in medical dismissals.
  • "Mysteries of medicine sometimes is a hardship to the patient and a heartache to the providers." (Dr. Haripaglu, 18:25)
• Serendipitous discovery: Dr. Haripaglu attends a pharmaceutical seminar, hears about periodic paralysis, and instantly connects the symptoms to Sienna.
  • "Oh my god, that's what she has... How didn't I think about it before?" (Dr. Haripaglu, 25:05)

The Breakthrough Diagnosis: Periodic Paralysis

• Symptom fit: Sienna’s unique pattern—muscle heaviness, symptom worsening with high carbs, temperature changes, and after exercise—points to periodic paralysis.
  • "She told me that I had periodic paralysis." (Sienna, 27:19)
• Biochemical mechanism: Dr. Haripaglu explains potassium shifts in the body cause sudden, temporary paralysis.
• Validation and relief: Sienna describes learning alongside her doctor, who remained steadfastly supportive as they navigated her rare diagnosis together.
  • "She'll always be in your back, like, in your corner. Whenever I have a new symptom, I feel like she's always the first person who I tell." (Sienna, 28:24)
• Management strategies: Sienna began potassium supplementation, dietary changes, and trigger avoidance. She notes her relative luck in finally receiving a diagnosis many live without for years.

ROHHAD: A Further Layer to the Mystery

• Additional rare diagnosis: Years after periodic paralysis, Sienna is diagnosed with ROHHAD—rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation—a potentially fatal disorder impacting breathing and body regulation.
  • "My brain just doesn't tell them to do the breathing thing." (Sienna, 34:46)
  • "All those years that Sienna had been passing out and losing her vision can be attributed to ROHHAD." (Lauren, 34:34)
• Life-saving interventions: Sienna required a diaphragm pacemaker and entered palliative care before her 25th birthday, defying the grim prognosis with each “bonus birthday.”

Living Fully: Advocacy, Community, and Joy

• Advocacy and joy: Today, Sienna reflects on the importance of representation for people with disabilities and cherishing every moment.
  • "It's not about how much time you have in life, but how much life you put in the time you have." (Sienna, 39:17)
• Support and friendship: Holly, her best friend, celebrates Sienna’s resilience and refusal to be defined by timelines or diagnoses.

Notable Quotes and Memorable Moments

• On living with undiagnosed illness:
  • "I didn't have these long term dreams or goals because there was no long term. I was just fighting to survive every day." (Sienna, 00:33)
• On dismissal in healthcare:
  • "They just kind of like write it all off. Eventually it was just like, what's the point?" (Sienna, 03:57)
• On doctor-patient partnership:
  • "We can learn about this together. There were some bumps and turns along the way, but we figured it out together, and we always have." (Sienna, 28:24)
• On music and survival:
  • "Playing saxophone probably kept you alive. When I stop playing is when I would start passing out." (Lauren & Sienna, 36:06)
• On the uniqueness of Sienna’s resilience:
  • "Try sticking her in a box or try telling her what she can't do. Give her a challenge, and then watch her soar." (Holly, 37:44)
• On what matters most:
  • "There’s so much joy in life every single day, no matter what you have or what you’re living with... it’s not about how much time you have in life, but how much life you put in the time you have." (Sienna, 39:17)

Important Timestamps

• 00:06: Sienna’s childhood health issues emerge
• 05:41: Major vision loss episode at band practice
• 07:56: Meeting Holly—bond over chronic illness
• 08:37: Series of medical misdiagnoses begin
• 15:50: Guillain-Barré syndrome and impact on daily life
• 17:38: Lack of satisfaction with new diagnoses
• 24:00: Dr. Haripaglu: first impressions of Sienna
• 25:05: Epiphany moment—connecting Sienna’s symptoms to periodic paralysis
• 27:19: Sienna receives her diagnosis
• 33:08: Years later, Sienna diagnosed with ROHHAD
• 36:06: Saxophone and survival
• 37:17: Sienna reflects on outliving her prognosis
• 39:17: Sienna’s message of positivity and advocacy

Conclusion

Sienna Dietrich’s story on Symptomatic is a powerful narrative about perseverance, the necessity of compassionate, creative doctors, and the value of community in the face of chronic illness. Through periods of confusion, despair, and physical decline, Sienna rewrote the narrative around her diagnoses, ultimately focusing on advocacy, living purposefully, and providing hope to others with invisible disabilities.

Resources Shared:

• Periodic Paralysis: periodicparalysis.org
• Sienna’s socials: @chronicallypersevering (Instagram, TikTok, Facebook, YouTube)

For further detail, follow the guide above to specific timestamps and notable quotes.