Sharing my story for Rare Disease Day

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

As an adult. After being married and having 2 kids with it my husband wouldn’t give up. I’d long lost hope of finding anyone like me let alone a diagnosis with what I had. He first found ppk and eventually found PC project. I got a free kit and was tested and finally received a diagnosis.

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

Pain. Isolation. Depression. Loneliness. Fear. Anxiety. Physically it seems to get worse with aging. The fear and frustration of will I be able to … gets harder. Being restricted of doing and living how I want on a daily basis because of my DNA is challenging at best. The scars from being bullied as a child never go away.

What has living with your rare skin disease taught you?

Patience. Acceptance. Resilience. Some people are quick to judge and others are curious or kind and caring.

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

The inconsistency of pain from day, hour or minute is frustrating. I wish I could pick and choose when to allow the pain to come.

What more do you want to say about your rare skin disease?

I wish I could hug any kid out there who feels alone with this disease. No one, especially a child, should feel isolated by not getting a proper diagnosis. Being rare should not equal being isolated.