ENERGY IN ACTION – EPISODE 063
Meet Devin the Genetic Counselor and Mito Patient
Devin Shuman is a Genetic Counselor based outside of Seattle, Washington. At age 16, she was diagnosed with MitochondrialRelated to the mitochondria. Depletion Syndrome (MDS).
EPISODE HIGHLIGHTS
How are you connected to the mito community?
I was diagnosed with Mitochondrial Depletion Syndrome (MDS) at age 16. My brother went through the diagnostic odyssey and also has the same form of mito, so while I had symptoms my whole life, I had a presumptuous diagnosis until age 16. In college, I attended a genetic counseling event that inspired me to become a Genetic Counselor.
Can you share about your work as a Genetic Counselor?
I currently work in telemedicine for a nonprofit called Genetic Support Foundation. The company provides genetic counseling directly to patients without the waitlist most genetic clinics have, and to break down barriers patients typically experience in a non-biased way. My job is to educate patients around their options.
As a clinician, how do you guide families through clinical testing?
My first job out of school was working in genetics at an autism center which taught me a lot about treating symptoms and when testing is or is not right for a patient. Clinical testing can sometimes help with medical management, open the door to clinical trials and connect families with communities. There are expense considerations in addition to weighing how answers will help with medical management and family planning that I help families make decisions around and have conversations about.
LINKS AND RESOURCES MENTIONED
Genetic Support Foundation — https://geneticsupportfoundation.org/
UDN Participant Engagement and Empowerment Resource (PEER) Group — https://undiagnosed.hms.harvard.edu/resources/peer/
