In this episode of Energy in Action, host Marcy Young introduces Devin Shuman—a genetic counselor who lives with a rare form of mitochondrial DNA depletion syndrome and brings a unique blend of medical knowledge and personal experience to the mito community. Devin shares her diagnostic odyssey, the challenge of navigating healthcare systems that have evolved rapidly in the last decade, and how genetic testing has both expanded and restricted access to appropriate care.
Together, Marcy and Devin discuss major shifts in how primary and secondary mitochondrial disease are defined, the growing emphasis on genetic confirmation, and the hope that more nuanced research will eventually help those stuck in diagnostic limbo. Devin’s down-to-earth perspective and empathetic approach highlight the importance of open communication between providers and patients. Tune in for a candid look at life with mito, the complexities of genetic testing, and the community resources that keep hope alive.
A monthly, informal webinar where you can ask Devin genetic-related questions in real-time.
Wondering Wednesdays – MitoAction
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Meet Sue Leone!
PARENTS AS RARE - EPISODE 046 Family Coping, Communication, & Mental Health Resources - Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics - Stanford University ...
In this episode of Energy in Action, host Marcy Young welcomes J.B. McGee, a mother and advocate whose story sheds light on the complex...
