Allison Block loves horses. She also lives with pachyonychia congenita (PC), a genetic condition that causes painful calluses on the feet. For Allison, horseback riding is a wonderful way to enjoy something she loves while spending less time on her feet. Earlier this month, Allison and her horse, … [Read more...] about Allison and Bubbles: Chasing Dreams with PC
Patient Stories
Still Fighting: Jane’s Story
Jane Santos lives in Fort Worth, Texas and has spent her entire life navigating the realities of pachyonychia congenita — as a patient, a mother of children with PC, and now a grandmother to the next generation. Her story is one of endurance, love for family, and a fierce determination to keep … [Read more...] about Still Fighting: Jane’s Story
Generations of Strength: Astrid’s Story
For 22-year-old Astrid Santiago Santos, Pachyonychia Congenita (PC) is more than a diagnosis. It's part of her family's story. Astrid grew up watching her mother live with PC. One of her two older sisters has the condition as well. Today, Astrid is a … [Read more...] about Generations of Strength: Astrid’s Story
Astrid
Generations of Strength: Astrid's Story For 22-year-old Astrid Santiago Santos, Pachyonychia Congenita (PC) is more than a diagnosis. It's part of her family's story. Astrid grew up watching her mother live with PC. One of her two older sisters has the condition as well. Today, Astrid is a … [Read more...] about Astrid
Eunice
Living with PC What is it like to live with PC? Most of my life my PC determined what I could do. I wasn't able to play any sports, had ongoing bealing fingers and toes. Was bullied in school until grade five, when we moved to a school where the other kids refused to allow bullying. As an … [Read more...] about Eunice
Ela
Finding Her Voice: Ela’s Story of Growing Up with PC At first glance, Ela Kislal looks like a typical 17-year-old high school senior. She loves plants and considers herself a horticulturist. She paints, writes, plays the flute (by her own admission, imperfectly), and is proud to be the child of … [Read more...] about Ela
Jane
Jane: Still Fighting Jane Santos lives in Fort Worth, Texas and has spent her entire life navigating the realities of pachyonychia congenita — as a patient, a mother of children with PC, and now a grandmother to the next generation. Her story is one of endurance, love for family, and a fierce … [Read more...] about Jane
Dorinda
Sharing my story for Rare Disease Day Dorinda has spent decades supporting her husband and children as they navigate life with pachyonychia congenita. As a spouse, mother, and grandmother, she has witnessed both the physical pain of PC and the emotional toll it can take on families — and the … [Read more...] about Dorinda
