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Red Herrings, the Diagnostic Purgatory & Mitochondrial Disease
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As a teenager, Devin experienced what she now describes as mito crashes and thought it was just a normal part of being a teenager. Her older brother led the way to a shared diagnosis of an autosomal recessive mitochondrial disease: mitochondrial DNA depletion syndrome. Devin’s diagnosis came as she was beginning to develop an identity as an adult. In college, she found community, support and activism among other disabled students and started identifying as Disabled. Today, as a genetic counselor, she brings her perspective and activism to the subjects of eugenics, disability, and inclusion: “If you’re not uncomfortable, you’re not growing.”
Related Resources
Mitochondrial Medicine Society: resources
Mitochondrial Disease Care Network
United Mitochondrial Disease Foundation: Teen and Young Adult Virtual Meet-Up Ages 16-35 (weekly)
Stella Young Ted Talk “'I’m not your inspiration, thank you very much”
Devin’s Ted-Ed talk (No, she didn’t choose the title. And it doesn’t make sense!)
Connect with Devin
Devin on Twitter: @DevinShuman
Request an appointment with Devin through the Genetics Support Foundation
Wish you could chat with Devin about mitochondrial disease? Every 4th Wednesday of the month, she hosts an hour-long session through Mito Action.
Check out other Patient Stories podcast episodes.
Read other Patient Stories on the Grey Genetics Patient Stories Page.
Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club!
Do you want to support Patient Stories? You can make a donation online!
Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.
Looking for a place to collect your family history and share with relatives? Check out the FamGenix app.
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