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 moving forward despite constant pain.
“Physical limitations don’t stop you from success. Your mind is the only thing that stops you. Still fighting.”
What is it like to live with PC?
Living with PC means waking up each day already in pain and wondering how you will stand, walk, or move. Some days you can walk the world; other days you cannot move because of the pain. It feels like knives piercing your feet, and the strain of trying to walk makes your whole-body ache. The medical equipment that helps — a cane, walker, wheelchair, or shower chair — becomes both friend and enemy. You are grateful for the support but don’t want people to see you and feel sorry for you. Living with PC is an ongoing emotional battle as much as a physical one.
Jane’s condition was discovered when she was two months old. Doctors struggled to understand it, and throughout her childhood she underwent many experimental treatments, biopsies, laser procedures, and a painful skin transplant at age eight. During recovery, her mother carried her everywhere and became her strongest pillar of support. At school, Jane endured severe bullying and isolation from classmates who feared her condition.
As an adult, Jane built a family of her own. Two of her three daughters inherited PC, and now four of her six grandchildren are expected to carry the condition. Watching younger generations face similar challenges is heartbreaking, but Jane has dedicated herself to helping her children build strength and resilience. Today she relies on a wheelchair much of the time, especially when working, and continues to face discrimination and barriers to employment and disability support because of limited public understanding of PC.
What is one challenge most people don’t understand?
Pain management. Many people assume the pain is temporary or not severe, but it is constant and life-altering.
What has helped you manage life with PC?
A wheelchair is an essential ally on days when walking is impossible. Just as important is the emotional and practical support of family.
How has the PC Project helped you or your family?
Through this project, I discovered how many other people live with this condition and realized we are not alone.
What do you hope for in the future of PC research?
I hope researchers find ways to slow the progression of the condition and improve quality of life for people with PC.
Is there anything else you’d like to share?
Living with PC is a great challenge, but the pain reminds us we are alive. I hope everyone living with PC continues to fight and pursue their goals.
Stories like Jane’s show the extraordinary resilience of families affected by PC across generations. Through research, education, and shared community support, we continue working toward better treatments and a future with greater understanding and hope for everyone living with PC.
