A New Beginning Amid Adversity: Johana’s Journey Facing Huntington’s Disease

Eight years ago, Johana Oviedo Barrios, a mother of three and a patient with Huntington’s disease from El Dificil, Magdalena State, Colombia was living in conditions of extreme vulnerability. Without access to basic services, a proper bed, or even a functional bathroom, her living conditions posed serious risks to her health and dignity.

Johana lived in an inadequate dwelling with dirt floors, lacking a proper bathroom and kitchen. Her home would frequently flood due to a leaky roof. The conditions in and around the home made it difficult for her to walk into the premises, and leading to frequent falls, due to her symptoms with Huntington’s disease, which impact her mobility.

This changed when Factor-H stepped in voluntarily and began a rights restoration process. Due to the progression of her illness and her inability to care for her children at the time, Johana’s two oldest daughters were placed in the care of their aunt Maribel Oviedo, daughter of Dilia Oviedo, a resilient woman who cared for 8 of her children and her husband, who suffered from Huntington’s disease for many years. Dilia was Johana’s grandmother and would frequently worry about how Johana would cope with her evolving disease, and how she would be cared for.

Thanks to the ongoing efforts of Factor-H—and with Johana’s two girls now being teenagers—a safe and decent home was rented for Johana in June this year. The house was equipped with essential furnishings to ensure proper living conditions. Today, though Johana is in a more advanced stage of the disease, she is cared for lovingly by her daughters, who attend to her hygiene and daily needs.

Her youngest son is being cared for by his paternal grandmother, providing him with the emotional and familial stability every child deserves.

While there are still significant challenges ahead in achieving full inclusion and comprehensive care, Johana’s life has been transformed—from neglect to dignity, from isolation to support. Factor-H continues to provide financial support for rent, food, and utilities, allowing Johana and her daughters to live with a level of comfort and safety that was once unimaginable.

This story is not only about illness, but also about strength, resilience, and the profound impact of compassion.