A 20-Year-Old Caregiver on Huntington’s Disease, Genetic Testing, and Showing Up with Love
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This week on Mind What Matters, Elizabeth Humphreys sits down with Mariana, a 20-year-old nursing student and caregiver whose story is both heartbreaking and deeply inspiring. Mariana grew up watching her mother live with Huntington’s disease, a genetic neurological illness that can affect movement, mood, memory, and independence. At 18, Mariana made the decision to get tested herself and learned that she also carries the Huntington’s gene.
In this raw and honest conversation, Mariana shares what it has meant to care for her mother through the progression of the disease, the emotional weight of hospice and end-of-life care, and the complicated reality of loving someone while also needing to protect yourself. She opens up about family, grief, advocacy, and the support systems that have helped her keep going. Together, Elizabeth and Mariana also talk about the hope surrounding Huntington’s research, including current clinical trials, and what it means to keep showing up with love, courage, and honesty when there are no easy answers.
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Mind What Matters is produced by the team at Palm Tree Pod Co.