Navigating CPEO: Talia’s Search for Answers, Care, and Community

July 02, 2025 00:41:24
Navigating CPEO: Talia’s Search for Answers, Care, and Community
Energy in Action by MitoAction
Navigating CPEO: Talia’s Search for Answers, Care, and Community

Jul 02 2025 | 00:41:24

/

Show Notes

Mental-health therapist, mom of two, and newly diagnosed CPEO patient Talia joins host Marcy Young to share the winding, often infuriating path that finally put a name to her drooping eyelids, crushing fatigue, and stubborn back pain. She recounts how a “lazy eye” noted in theater head-shots snowballed into years of misdirection—optometrists, ophthalmologists, a false alarm for myasthenia gravis—before a neurologist labeled her condition but offered no guidance. Together, Marcy and Talia unpack why securing genetic testing, specialty care, and even a simple referral can feel like trench warfare when you have a rare mitochondrial disease.

The conversation ranges from parenting with unpredictable energy, “hundred-thousand-dollar mouths” (severe dental problems common in mito), and ADHD-like brain fog to the science linking chronic stress and adverse childhood experiences (ACEs) with health outcomes—spotlighting Gabor Maté’s When the Body Says No. Committing to radical transparency, Talia vows to chronicle each step of her quest for a mito specialist and a full genetic work-up in future episodes, offering listeners a real-time roadmap for self-advocacy and resilience.

Resources & Links

Other Episodes

Episode 88

July 12, 2023 00:40:41
Episode Cover

Exercise for Mitochondrial Patients

ENERGY IN ACTION - EPISODE 088 Exercise for Mitochondrial Patients   Dr. Nicole Voet joins us from the Rehabilitation Department of Radboud University Medical Center...

Listen

Episode 89

July 19, 2023 00:57:23
Episode Cover

Grandparents As Rare - Go Find Your Bike

  PARENTS AS RARE - EPISODE 089 Grandparents As Rare: Find Your Bike, With Karen Richtman   Karen Richtman shares her patient story, shining light on...

Listen

Episode 63

September 07, 2022 00:32:01
Episode Cover

Meet Devin the Genetic Counselor and Mito Patient

ENERGY IN ACTION - EPISODE 063 Meet Devin the Genetic Counselor and Mito Patient   Devin Shuman is a Genetic Counselor based outside of Seattle,...

Listen