Red Herrings: The Diagnostic Purgatory of Mitochondrial Disease
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."
Connect
- Mitochondrial Medicine Society: resources
- Mitochondrial Disease Care Network
- United Mitochondrial Disease Foundation
- Stella Young TED Talk: "I'm not your inspiration, thank you very much"
- Devin on Mito Genetics 101
- Devin on Mito Genetics 102
- Devin's TED-Ed talk
- Devin on Twitter: @DevinShuman
- Request an appointment with Devin through the Genetics Support Foundation
- Devin hosts a monthly Q&A through Mito Action (every 4th Wednesday)
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