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 adult I had difficulty with my feet every day until I got an amazing foot specialist who fitted me with orthotics. It was the first time I could walk without pain. Eighteen years ago I went on a gluten free, dairy free diet and my life changed. Today I am very active and rarely have any issues. I am truly blessed. I have a son who suffers greatly with his PC. He has two sons who also suffer. I am so thankful for this registry that is increasing awareness, doing research to help us. Thank you

What is one challenge of PC that most people don’t see or understand?

The pain walking around every day.

What has helped you most in managing life with PC?

Changing my diet and orthotics

How has PC Project helped you?

It’s given us a community so we don’t feel alone.

What do you hope for when you think about the future of PC research or treatments?

Better management of the pain.

Is there anything else you’d like to share about living with PC?

I’m so thankful that I don’t suffer as much as my mother did and my son does.