Every June, those of us living with Pachyonychia Congenita (PC) – plus our families and friends who love us – come together around a chosen theme to raise awareness about this debilitating disease.
This year, our theme for PC Awareness Month is “What I Wish You Knew About PC.”
We are so excited about this theme because it gives us a chance to share our personal stories and help educate our friends, family, doctors, and employers about what living life with PC is all about and what we’d like them to know.
Here are a few simple things you can do today:
- Post your own selfie video to social media talking about what you wish people knew about PC and why that understanding would make things better for yourself or someone you love. (Make sure to use the hashtag #WhatIWishYouKnewAboutPC and tag @pachyonychia or complete this form (send video link, upload video/photos or write your answers))
- Please watch for videos from others, and share them with your family, friends and followers.
- Make a donation – All donations in the month of June will be matched.
What I Wish My Doctor Knew About PC
PC is a rare disease that affects people all over the world. Unfortunately, most people never heard of PC, and those who have often do not understand what it is and the challenges we face every day.
This can be incredibly frustrating, especially when the person who doesn’t know is your doctor. PC Project works hard to educate medical professionals. Watch and share this video by our Board Chair and PC patient, Jack Padovano.
What I Wish My School Knew About PC
I’m 13 years old and I have Pachyonychia Congenita. PC makes my feet hurt so much that I sometimes need crutches or a wheelchair. This makes everyday tasks really hard, especially in school. Sometimes I can’t get to my classes on time, and it’s hard to participate in some of the activities the other kids get to do.
I don’t want to be different. All I want is to go to school and learn, just like all the other kids. But to do that, I might need a little help like extra time to get to class or complete my assignments.
Most of my teachers try to be understanding. But some teachers just don’t get it. When teachers don’t understand what it’s like to have PC, it just makes a hard day even harder.
But I’m grateful that PC Project is working every day to educate people about PC, so that kids like me can get the support we need to do our best in school.
What I Wish My Friends Knew About PC
When PC Project asked me to make a video talking about what I wish others knew about PC, I almost said no.
I have spent a lot of time and energy hiding my PC, especially from my friends. PC causes extremely painful callouses and blisters on my feet. They are not very pretty to look at so I avoid any activities where my feet are exposed.
But it’s more than that. I also hide the fact that I’m in almost constant pain. I don’t want the people who care about me to worry.
But the hiding causes its own problems. Sometimes the pain makes me get angry and lash out. Sometimes I cancel plans last minute because I’m tired or my feet hurt. By not being candid about my PC, friends can think they did something wrong, or I don’t want to see them.
Because PC is so rare, it’s easy to feel alone. Thankfully PC Project has given me a community of other PC patients, their families, doctors, and other PC allies that provide understanding and connection.
But I also have a community of friends that would support me too, if I’d just give them the chance to understand what I’m going through.
What I Wish My Family Knew About PC
When my daughter Vania was first diagnosed with PC, I had a million different questions. Some the doctors could answer, others they couldn’t.
Fortunately, I found PC Project.
PC Project helped me understand what PC is and what it isn’t. They reassured me that Vania could still have a great life. They taught me ways to manage her symptoms, and what to expect as she got older. PC Project is a vital resource I still count on almost every day.
But no matter how much I educate myself about PC, I can’t know how my daughter experiences having PC unless she tells me.
So my number one job as a mom and PC caregiver is to listen and understand.
I believe families are the first line of support for PC patients. Even a good day is hard for Vania, and she will encounter enough challenges outside of our home. As her family, we want to provide love and empower her.
And that’s what PC Project strives to do, too. I’m comforted knowing that Vania and other PC patients also have their PC Project family to count on when they need them.
What I Wish My Employer Knew About PC
Every day when I go into work, my spirit and energy starts pretty high. But unfortunately, it doesn’t last.
As the day goes on, pain in my feet from Pachyonychia Congenita (PC) takes its toll on my mood and my energy level. I’m less productive than I want to be.
Because this disease is so rare, most people have never heard of it, including my employer and coworkers. Even after I explain, most still don’t understand how hard it can be to do the things they take for granted — things like standing up or walking just a few steps.
There’s a lot I wish the people I work with understood about PC. But most importantly, I wish they knew that having PC doesn’t mean I can’t be a good teammate. It’s the opposite.
PC has taught me that I’m more resilient than most people. I have lots of compassion for others when they are struggling or in pain. I find creative solutions to many of the challenges of PC. All of these qualities make me better at my job.
That’s what I want my employer and coworkers to know.
