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 mitochondrialRelated to the mitochondria. disease.
EPISODE HIGHLIGHTS
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 fatigueThe overall feeling of tiredness or lack of energy. It is not the same as simply feeling drowsy or sleepy. Being fatigued means having no motivation or energy., 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 specialistA doctor that focuses on one branch of medicine. and a full genetic work-up in future episodes, offering listeners a real-time roadmap for self-advocacy and resilience.
Resources and Ways to Connect
- ACE (Adverse Childhood Experiences) Information & Self-Quiz
- Book Mentioned:When the Body Says No by Dr. Gabor Maté
