How caring for family members led me to Huntington’s advocacy

From left, family members Fernando Torres, Ana María Torres, and Rafael Torres take a Sunday stroll. (Photos courtesy of Ana María Torres)

This is Ana María Torres’ story:

My first memories of Huntington’s disease come from my uncle Mau, my dad’s brother. He was often irritable, spoke loudly, and walked strangely. Eventually, he had to move into a nursing home, and we’d visit him on weekends. He died when I was a child. Years later, when I was 14, my dad told us about Huntington’s disease. At the time, I thought we were safe, as none of us had symptoms like my uncle. But about five years later, my dad tested positive.

I was born in Colombia and grew up in Costa Rica, where I lived for 17 years. In 2014, we received the confirmed diagnosis: My dad had Huntington’s. He’d already begun showing symptoms and had to leave his job. My uncle Fer was also diagnosed and in a similar situation. It took only a single phone call from my aunt Constanza for me to realize that I needed to return to Colombia. That decision meant leaving behind my job, my home, my friends, my comfort zone — and most painfully, my mom. I don’t remember exactly what my aunt said during that call, but I knew my dad needed me.

Between 2015 and 2021, my aunt and I dedicated ourselves to caring for my dad and uncle. Together, we learned to live with Huntington’s. The disease’s progression and the urgent need to bring them relief awakened in me a desire to improve their quality of life through palliative care.

I began formal training, but my greatest lessons came from everyday life: observing the disease’s progression, adapting to each new challenge, and learning to provide not only physical care, but also emotional support for the entire family. Humor, unconditional love, tenderness, patience, compassion, and acceptance became our way of getting through it all — our survival kit. In one word, it entailed resilience. I couldn’t have done it without the support of my partner, Daniel, and my family, each of whom contributed in their own meaningful way.

Ana María Torres, her husband, Daniel Navas, and their dog, Panda, are pictured in their home in Canada, where Torres is a Huntington’s advocate. 

In 2021, both my dad and uncle died within weeks of each other after battling COVID-19. The following month, I moved to Canada to begin a new chapter of my life. It was a time of intense emotions: grief for my losses and for leaving my country again — but also hope and excitement for what was to come. Just a few months later, we also lost my aunt Constanza. Our beloved family, in less than six months, began a new journey in another dimension.

In Canada, I connected with the Huntington Society of Canada, the Huntington Society of Quebec, and the Huntington’s Disease Youth Organization (HDYO). Factor-H supported me in attending my first international Huntington’s disease conference, which truly changed my life. I also began supporting AcolpEH, Colombia’s national HD association, from a distance. In addition, I became a member of the HD-Community Advisory Board, where I advocate for the voices of patients and families to be heard in clinical research.

This year, I had the privilege of attending the HDYO Congress with my brother. I was part of a panel called “Cultural Exchange: Experiences from Around the World,” where we spoke about living with Huntington’s in countries with limited resources like Colombia.

More recently, I launched the youth chapter of AcolpEH to offer support and connection to other young people impacted by Huntington’s in Colombia. I joined Enroll-HD as a participant and continued to grow in my advocacy work. This year, I’ve been honored to be named vice president of AcolpEH and youth area representative for Quebec.

Today, at 34, I’m a palliative care nurse, a Huntington’s advocate, and someone living at risk. I carry my family’s story with love and walk this path with empathy and determination — connecting with people, making friends, and supporting one another through this turbulent journey.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.