Sharing my story for Rare Disease Day

“I was first diagnosed with PC when I was a baby. My parents had no idea what was going on, my nails turned black, they started seeing all kinds of doctors and finally found PC Project. I have always felt embarrassed of my disease and hide my fingernails.

Honestly, PC has made me stronger and made me into the pearson I am today. But it makes it very hard for me to do daily tasks that might seem easy to some of you. I work 6 days a week as a hairstylist so I am on my feet a lot. By time I get home it’s hard for me to want to clean or cook so I feel like I don’t get things done that I could if I didn’t have painful feet.

I’ve been depressed a lot over my disease. Why me? Why did I get this and no one else in my family? I may never know. But I know I am stronger because of it.

PC has taught me I have a high pain tolerance for sure.

I wish people understood that PC is NOT A FUNGUS!

I love that I am rare and that I am different, but I wish I could have one day without pain in my feet.”

-Rachel

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

When I was a baby. My parents had no idea what was going on, my nails turned black, they started seeing all kind of doctors and finally found PC project. I have always felt embarrassed of my disease and hide my fingernails.

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

Honestly, it is the thing that has made me stronger and who I am today. But it makes it very hard for me to do daily tasks that might seem easy to some of you. I work 6 days a week as a hairstylists so I am on my feet a lot. By time I get home it’s hard for me to want to clean or cook so I feel like I don’t get things done that I could if I didn’t have painful feet: I’ve been depressed a lot over my disease. Why me? Why did I get this and no one else in my family? I may never know. But I know I am stronger because of it.

What has living with your rare skin disease taught you?

It has taught me I have a high pain tolerance for sure.

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

It is NOT. A FUNGUS’

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

I love that I am rare and that I am different, but I wish I could have one day without pain in my feet

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