Sharing my story for Rare Disease Day

Paul navigates the daily physical and emotional challenges of pachyonychia congenita. His story reflects the hidden toll PC can take on identity, relationships, and dreams — and the deep human desire for connection and acceptance.

“People think you’re pretending… but you’re the only one who can truly feel what you’re experiencing.”

What is it like to live with PC?
Living with PC has been stressful, painful, and emotionally exhausting. I have experienced rejection in relationships and social situations. I’ve always loved careers that require physical strength — medicine, the army, football — but my condition limits what I can do. I can barely walk or stand for long periods, and I cannot exercise the way I want to. Sometimes, even family members avoid being seen with me in public because they fear teasing. These experiences are isolating and painful.

What is one challenge most people don’t understand?
People sometimes think you are pretending or exaggerating your pain when you cannot do something they ask. They forget that you are the only one who can truly feel what you are experiencing.

What has helped you manage life with PC?
Managing pain is partly psychological. I use video games and other activities to distract my mind and try to avoid loneliness as much as possible.

How has the PC Project helped you?
It has given me insight into my condition and helped me understand how it affects other people around the world.

What do you hope for in the future of PC research?
I hope a real cure is developed — one that works and is affordable, so patients in developing countries can access it.

Is there anything else you’d like to share?
I worry about having children because of the genetic risks. In my culture, alternatives like sperm donation are not widely accepted, which makes these decisions even more difficult.

Stories like Paul’s highlight the social and emotional dimensions of living with PC, including the challenges of stigma, isolation, and future planning. Through research, education, and global community support, we continue working toward treatments and understanding that can improve the quality of life for people with PC everywhere.