Are you ready to spread the word about PC? #WalkInMyPCShoes
June is PC Awareness Month, and we’re thrilled to announce our “Walk in My PC Shoes” campaign — a special opportunity for you to share your experience of living with Pachyonychia Congenita (PC) to help raise awareness about this debilitating disease.
Every PC patient has a personally unique “bank account” filled with the number of steps they can walk each day before excruciating pain forces them to stop. It can vary widely day to day. Some days we feel rich (thousands of steps in the bank account). Other days we subsist on a few hundred steps or less.
However, for those of us living with PC, each step we take is a reminder of the pain we endure due to this rare genetic skin disorder.
But most people don’t understand what it’s like to walk in our PC shoes. That’s why we’d like to invite you to participate in our #WalkInMyPCShoes awareness campaign.
Simply record a video talking about your experience of living with PC and share it on social media. To help inspire you, we’ll be sending you videos from other brave PCers — like this one from Stephen Wittmer.
Stephen describes how PC is “something you have to manage your whole life.” For him it involves getting medicated just so he can spend quality time with his family, taking showers on his hands and knees, and other accommodations to conserve his very limited bank account:
We are so grateful to Stephen for his vulnerability talking about his experience walking with PC. As someone who struggled for many years hiding our feet from even the people closest to us, we understand the courage it took for him to make that video.
Your video doesn’t have to include anything you don’t want it to. Be yourself and share only as much as you feel comfortable sharing.
It’s simple to participate:
- Use your phone to record and a short video: Take a moment to describe your personal experience of walking with PC. (Please upload your video here to allow us to share it with the wider PC audience to help educate and inspire PC supporters.)
- Share your video and spread the word: Share your video with friends, family, and colleagues on social media. (Make sure to use the hashtag #WalkInMyPCShoes and tag @pachyonychia.) Encourage them to participate in the campaign or simply learn more about PC and its impact.
- As a bonus, please consider emailing your video to your doctor or healthcare provider, accompanied by information about PC Awareness Month. By increasing awareness within the medical community, we can enhance support and resources for individuals living with PC.
PC Project has taught us that we can accomplish the most challenging goals when we all do our part. And while the path to a cure may be a long one, we know this: With every painful step we take, this difficult journey is made easier with caring people like you by our side. Together, let’s stride towards a world where individuals with PC are understood, supported, and empowered!
Thanks to a very generous PC Project donor, all gifts donated during the month of June will be matched twice. That means all donations will be worth three times as much! Please spread the word!
#WalkInMyPCShoes Videos
#WalkInMyPCShoes Story
Coping with PC (Pachyonychia Congenita)
When I was able to walk as a baby, this incurable disease introduced me to the pain of PC. My father had this disease, which he got through a spontaneous mutation. Neither his mother nor father had any trace of this condition. Nor were his two sisters or one brother affected. So, Dad was the guinea pig, the one who had to see multiple doctors in an attempt to solve this problem. The time was in the early 1930s. To conclude, my father passed away in 2001, never knowing what caused our disease.
My older sister, Denise, also had the disease from the time she was a year old. I can’t imagine what my mother went through with the three of us hobbling around the house. We know now that our disease is caused by an excess of the Keratin gene. Around 2009, Denise discovered a group out of Utah (PC Project) that had made a breakthrough while using a lab out of Scotland. In essence, the Scotland lab had identified that our skin cells had no strength. Even as one-year-olds, our weight caused blisters that eventually became calluses. These calluses would form where our skin would touch the floor. As these calluses thicken, we must trim them with small instruments or single-edge razor blades.
My dad trimmed my feet until I turned 11 (I’m now 70). I still remember him gripping his strong hand around my ankle to keep me from moving. You see, I was and still am very ticklish. And it’s not just my feet. My poor father had to hold that very sharp razor blade while I did everything to escape his grip. At 11, he told me I was responsible for caring for my feet. Believe it or not, I’m pretty talented these days, trimming these buggers to a fine thickness.
The thing about having PC as a kid is that no one can see your feet. Most folks wear socks and shoes to school and work. Who wants to see someone taking off their sock to show you what’s wrong and why they are limping? And it’s not just standing or walking. Sometimes, I must hang my feet off the bed because my bed cover hurts the calluses. Can you imagine? This is usually when we have rain, snow, or high humidity.
I was lucky that my parents never told me to take it easy. They allowed me to play all sorts of sports. By the way, my dad hated all sports. I played baseball, football, and basketball until I reached 16. I built a pain tolerance that I could handle. My neighborhood friends understood my condition. The coaches also took care of me. I knew I could never play soccer simply because it was non-stop action. Both baseball and football give you breaks between plays. That was what I needed to calm my feet down.
At the age of 16, I began to play ice hockey. Oh my God, what a difference this sport made. I could skate for 2 hours without pain. It was the best feeling I ever had while playing a sport. I continued this game for 23 years until I turned 42. Here’s the big deal behind the sport of ice hockey. Your foot is placed in a boot that is solid and tight. The blade edge just glides along the ice. Your foot never bends in that boot. So, no calluses are affected because you are not flexing your feet as you do when walking. The skateblade takes on all of the torque. Try it sometime!
Our PC Project needs all the support we can give them. Please know scientists, doctors, labs, and many others continue to spread awareness of our condition. I’m what they call a K16 patient. We also have K6A, K6B, and K17 mutations. Some of those patients never grow calluses. I consider myself lucky because those thickened calluses allow me to walk. Try to picture some of the other mutations that only create blisters. Can you imagine trying to walk on nothing but blisters? It was sad to see children in wheelchairs who may never walk. Let’s hope they find a cure, whether a new lotion or a DNA answer.
God Bless,
Michael J. McCullough
Get ideas from what others have done to raise PC awareness in past years.
