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
MitoAction – education, support groups and weekly “CPEO Corner” calls
ACE (Adverse Childhood Experiences) Information & Self-Quiz
Book Mentioned: When the Body Says No by Dr. Gabor Maté
ENERGY IN ACTION - EPISODE 041 EveryLife Foundation Newborn Screening The EveryLife Foundation is dedicated to empowering the rare disease patient community to advocate...
ENERGY IN ACTION - EPISODE 038 Patient Led Trials Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease...
ENERGY IN ACTION - EPISODE 102 Advocate for YOU Jen Owen is a mito patient and mito mom, joining me to share her personal...
