Sharing my story for Rare Disease Day

Bertha Felix lives in California and has spent much of her life navigating the physical pain and emotional weight of pachyonychia congenita. Her story speaks to the hidden challenges of PC — and the power of knowledge and community in helping families move forward.

“Painful and limiting are the first words that come to mind, but there is also shame… I’ve spent most of my life trying to avoid people seeing my feet and hiding the disease from everyone.”

What is it like to live with PC?

Painful and limiting are the first words that come to mind, but there is also shame. I’ve spent most of my life trying to avoid people seeing my feet and hiding the disease from everyone.

What is one challenge most people don’t understand?

The fatigue that comes from the pain and growth of the callus. It is physically painful to walk even with the most comfortable shoes, but you learn to push through it or risk letting everyone down. People don’t understand the constant pain.

What has helped you manage life with PC?

Grooming my feet weekly and being careful about the shoes I wear. I also keep an extra pair of slippers in the car.

How has the PC Project helped you or your family?

Understanding the genetics and reviewing the available resources. Knowing there are so many others like us.

What do you hope for in the future of PC research?

I would love for there to be a way to better manage the genetic mutation and possibly stop the transfer.

Is there anything else you’d like to share?

It is hard to see your children suffer from the condition. This organization has given me the language to help equip my daughter with a response to teasing.

Stories like Bertha’s remind us why the PC community matters. Through research, education, and shared support, we continue working toward better treatments and a stronger future for everyone affected by PC.