Sharing my story for Rare Disease Day

“I was first diagnosed with PC at the age of 28. I was originally told our family had a different rare disease. Finding out I actually had PC was emotional. I was happy to finally have a clear diagnosis.

To be honest, living with PC has been sort of a rollercoaster of emotions. I felt so different from other kids when I was younger. I wasn’t allowed to participate in any sports. I had surgeries to remove the nails when I was 7 and 8. I felt very lonely. None of my friends or even some family knew what it was like to have PC. PC has definitely taught me to be a kinder person. I feel that PC pain is a different type of pain than what people without PC experience. We aren’t lazy!”

When and how you were first diagnosed and how did that feel for you?

I was first diagnosed at the age of 28. I was originally told our family had a different rare disease. Finding out I actually had PC was emotional. I was happy to finally have a clear diagnosis.

What is it like to live with your skin condition? How has it impacted your life, both physically and emotionally?

To be honest living with PC has been sort of a rollercoaster of emotions. I felt so different from other kids when I was younger. I wasn’t allowed to participate in any sports. I had surgeries to remove the nails when I was 7 and 8. I felt very lonely. None of my friends or even some family knew what it was like to have PC.

What has living with your rare skin disease taught you?

PC has definitely taught me to be a kinder person.

Are there any misconceptions about your condition that you’d like people to understand better?

I feel that PC pain is a different type of pain than people without PC. We aren’t lazy.