Episode 61- Pizazz, Purpose, and Periodic Paralysis: How Cienna Ditri Turns Lived Experience into Advocacy
Thursday, March 26, 2026
In this Quest Podcast episode, we chat with advocate, social media influencer, and President of the Periodic Paralysis Association (PPA), Cienna Ditri, who lives with periodic paralysis. Cienna shares her diagnostic journey — from childhood soccer games where something felt “off” to finally getting answers — and how living with an unpredictable condition has shaped her into a fierce and passionate self-advocate. And because style is never far from the conversation, she shares her love of adaptive fashion and how personal style has become a powerful form of self-expression and identity. Cienna shares her experiences, expertise, and advice when it comes to resilience, pizazz, and the belief that every one of us — whether in the doctor’s office, on the plane, or in the fitting room — deserves to be assumed competent.
Your Guests
Cienna Ditri
Cienna Ditri is a rare disease advocate, social media influencer, and President of the Periodic Paralysis Association (PPA). Diagnosed with Periodic Paralysis and a handful of other rare and life-limiting diseases in her early 20s, she uses her platform to raise awareness, educate, and support others navigating life with chronic illness. With her motto, “My conditions are chronic, but my style is iconic,” Cienna blends advocacy with self-expression, proving that disability does not define a person’s potential. Through her leadership at PPA and collaborations with brands like Lancome, Anthropologie, and Nurtec, she is driving change in medical research and disability representation alike. Beyond advocacy, Cienna embraces life boldly—training as a parasurfer, championing accessibility, and encouraging others that advocating for themselves and their dreams never goes out of style.
Connect with Cienna:
Facebook: @chronicallypersevering
Instagram: @chronicallypersevering
TikTok: @chronicallypersevering
YouTube : @chronicallypersevering
Host: Mindy Henderson
Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a speaker and a writer, and author of the book, The Truth About Things That Suck.
Connect with Mindy:
Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.
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