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 importance of having a knowledgeable, supportive community.

“I have seen him crawl in the door when his feet were sore… and it breaks my heart to know my only grandson will go through all this.”

What is it like to live with PC as a family member?
I have seen so many on my husband’s side of the family live with the pain of PC. I witnessed bullying in school when my kids were young, and my husband would fight if someone said something. I have seen him crawl in the door when his feet were sore. I have seen infections, and doctors who had never heard of PC and did not know what to do. People see you and think you look healthy, not knowing the suffering it takes to try to work. It breaks my heart to know my only grandson will go through all this. We always let our kids play sports and didn’t treat them differently. As they grew older, they learned their limitations. The PC foundation has helped our family so much.

What is one challenge most people don’t understand?
The pain, the blisters, and the infections.

What has helped you most in managing life with PC?
The pamphlets, so we don’t have to explain everything to a doctor. The help we’ve received from Mary and Janice.

How has the PC Project helped you or your family?
In many ways. Whenever I have questions or need help, they have always answered me.

What do you hope for in the future of PC research or treatments?
More information for doctors and schools about PC, and better help with the pain.

Stories like Dorinda’s remind us that PC affects entire families, not just individuals. Through research, education, and shared support, we continue working toward better understanding, better care, and a stronger future for everyone touched by PC.