A 20-Year-Old Caregiver on Huntington’s Disease, Genetic Testing, and Showing Up with Love

In this episode of Mind What Matters, Elizabeth Humphreys sits down with Mariana, a 20-year-old nursing student, advocate, and caregiver for her mother, who is living with Huntington’s disease. Mariana shares what it was like growing up with a parent whose illness affected her movement, mood, memory, and ability to live independently. She also opens up about making the decision to get tested for Huntington’s at 18 and learning that she carries the gene herself. This is a raw and wise-beyond-her-years conversation about young caregiving, hospice, anticipatory grief, advocacy, family, and the courage it takes to keep showing up at the end of life. Elizabeth and Mariana also discuss the hope surrounding Huntington’s research, including current clinical trials and the urgent need for better treatment options. In this episode, we talk about: – What Huntington’s disease is and how it affects families – Becoming a caregiver at a young age – Choosing genetic testing at 18 – The emotional toll of hospice and end-of-life care – Self-protection, guilt, and showing up with love – Advocacy through the Huntington’s Disease Youth Organization – Hope for future Huntington’s treatments and clinical trials #huntingtonsdisease #clinicaltrials #genetictesting