In this episode, Marcy welcomes returning guest Devin to unpack what happens after the diagnostic odyssey—whether you’ve received a genetic answer or are still in limbo. Devin, a genetic counselor, breaks down what GCs actually do (and how they differ from physicians), why ongoing check-ins matter even years after testing, and how evolving science can change what your results mean. She explains reanalysis, mosaicism, and why new symptoms or improved technology can justify another look.
They also dig into life without a confirmed variant: how to advocate for broader testing, realistic paths to specialty care, the pros/cons of clinical trial eligibility, and why belonging to the mito community can still be validating and useful while you search for answers. Devin shares practical tips for accessing genetic counseling beyond major centers (including telehealth), navigating insurance, and timing reanalysis so it’s most likely to help.
What you’ll hear:
Genetic counselors 101: scope, training, and how they complement your care team
Why post-result follow-ups matter: updates, trials, family planning, and changing guidance
Reanalysis timing, tech improvements, and edge cases like low-level mosaicism
Strategies when testing is “negative” or inconclusive—without losing support or momentum
Access options outside big clinics, including virtual care and multi-disciplinary programs
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