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.
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.
I’m 14 years old and I also have PC. Sometimes in school it is hard for me as I just want to do what everyone else is doing. However, I don’t let PC stop me from doing what I like to do and I still play football on a regular basis and I actually play for a team. When I’m home I pretty much can’t walk and it feels like I’m walking on nails. But once I wake up they are much better. Me and my dad who both have this condition have ways of cutting our feet so the pain isn’t so bad and it helps us to be able to better walk around.Harry #Whatiwishyouknewaboutpc
Hi, I’m Mouna I’m 13 almost 14. I’m the only one in the family who has a PC. At school, it’s very hard but I try not to let anything stop me from studying and having fun. I make an effort but I regret it. But, I still do it again even if I know it will hurt me a lot.Mouna
“Living with an invisible disability is just as mentally challenging as it is physically. I hate admitting it, but I experience a lot of struggle with my mental health due to PC.
As a kid in elementary school, I remember how vivid my insecurities were surrounding my voice specifically. I was born with laryngeal involvement with leukokeratosis of the larynx, which is a PC complication. Because of this, I had a few surgeries on my voice box, which resulted in me having a very hoarse voice. I could not listen to myself in audio recordings without feeling awful, and I was very quiet in school simply because I didn’t want anyone to hear me. Additionally, I remember being in breathing therapy in grade 4 and having such a rough time with my mental health. My problems were just so vastly different than those of my peers. No one sounded like me. No one saw me.
Now I often feel trapped, where I know that I need help but I never feel like I deserve it. I am slowly learning that I should not be pushing away aid and treatment just because of the fact that PC pain is invisible. A recent example is my refusal of taking pain medication, no matter how much pain I was in. I recently was able to push past this! I will hopefully be able to continue winning this battle. Even further, I am not immune to the jokes made regarding my disability, made by anyone other than myself. My suffering is mine alone to joke about. When my peers repeat or add to my jokes, I feel as if my real struggles with pain aren’t taken seriously.
Anyways thank you for taking the time to read all this. I hope my story can help normalize invisible disabilities and their struggles. ”
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.
“When I was a child, my mom always gave me PC friendly chores to do. I couldn’t mow the lawn or do chores that involved being on my feet for a long time. But I could fold clothes, kneel on a chair to do dishes or clean bathrooms. I am really grateful for parents who knew that my feet hurt and yet still taught me the value of work by giving me jobs I could do. That was a lesson I am still grateful for today as an adult.”PC Patient
A family member of a PCer, Magda, shared the following for PC Awareness. “What I wish you know about PC, pachyonychia congenita abbreviated PC, is a rare disease that alters the body’s keratin causing changes in the nails and skin, a very painful disease that you have to live with every day, that for a normal person it’s like walking on broken glass.
Today I am going to speak for my brother, and what this condition has affected his daily life.
Alfonso is a boy who was born in a family of farmers in the state of Michoacan Mexico, when we realized his condition was just a few months old we saw alterations in his nails and tongue, my parents took him to the doctor and it was something unknown to them At first they began to treat him for fungus because the doctors were unaware of his disease. My parents never stopped looking for an answer until one day a pediatrician sent him to the state of Jalisco to the dermatological institute, there the doctors began to do tests and It was when we found out that Alfonso had pachyonychia congenita, the doctors from the dermatological institute of Jalisco was very interested in my brother’s case because it is a very rare disease, they helped my parents to find the PC Project and they helped us register him, after the genetic test it turned out that he is the only one in my family who has it and his alteration is K16.
Life with PC – It has been very difficult for him because he is a farm boy who has to limit his activities, since he likes to ride horses and wear cowboy boots but he does not do it much because it is very painful for him, even with his limitations when he feels good and on a special occasion he tries to do it because he has a love for animals, he gives his best, he is a very intelligent boy, he learned to ride his bicycle at the age of 3 because he saw that he could move without hurting his feet.
From Alfonso: “As a teenager it is very difficult to do my life because I can’t do the same activities as my friends, because I can’t take the same steps as them, I can’t play soccer and I love it, I can’t wear my boots for a whole day because my feet hurt At some point in my life I was even judged by my teachers because they don’t take it as a serious illness, they lower my grade because I can’t participate in the parades at school or because I can’t do sports even if my family reports and translates all the information of PC.”
What I wish is the doctors and all the people know is that it is worth continuing to support this noble cause that is looking for a cure, that PC is a disease that affects the day-to-day life of people and the family around them. Keep investigating and keep supporting so that people like my brother have a better quality of life, if you don’t know, investigate, you can ask us. I would like PC to become as well known as other diseases, that campaigns be carried out just as big to inform everyone that PC exists and that many people around the world have PC so that they support this noble cause: find a cure for PC!”
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.
My version of what I wish people knew about PC
PCer Megan puts a beautiful twist on PC Awareness Month and shares why she’s grateful she has PC!
And please remember, everyone with PC is different, with different types of PC and different mutations.
What I Wish PC Youth Knew About PC
PCer Andrew shares his thoughts about living with PC, especially for PC youth.
What I Wish You Knew About PC Pain
PCer Eliza shared this post on social media, “What I wish you knew – Living with an invisible disease is harder than it should be…
In honor of June being pachyonychia awareness month, I am sharing my story. I have a rare genetic disorder called PC. This disease does not have a treatment and is degenerative. There are many symptoms associated with PC, but I just want to touch on one aspect, pain. There are many disabilities and disorders that are considered ‘invisible’, that doesn’t make them any easier to live with. I live with pain every day and managing that pain dictates many of the choices I make. Walking on uneven ground, standing for long periods, and working in heat and humidity make managing my disease harder. At times disease management also means using a walking aid. However, with minimal accommodations at work, I have been able to manage my symptoms and do the job that I love.
There are many ‘invisibly’ disabilities. When you see someone who does not look like they need accessibility or accommodation, are we as a community being respectful and letting that person have their privacy. It is common to be put on the spot asked to explain why I get to park in accessible parking. In those instances, I feel like I divert to humor to play it off. There are really only a few options for anyone put in that position, downplay, give out personal details, or shut down the conversation. Most of the time I feel comfortable advocating for myself, not everyone does. Nor should they have to explain or provide personal details to access accommodation.
So, in the spirit of creating awareness and honoring those who have to struggle everyday with an ‘invisible’ disease, let’s freely offer compassion to others, even before knowing their story. It is also very important to create an environment where we all feel comfortable sharing our stories with each other. I want to challenge everyone with a quote from an essay I read recently.
“Spend your life believing that each individual person has probably suffered more than they ever should have and then refrain from adding your judgment to their burden.””
Every day when you get up out of bed, it starts. It takes almost all of your energy to do normal things. Nobody understands what’s wrong with you, because they don’t see it at first sight. That’s why PC Staff wants to share and spread this message.
I myself, suffer from PC and live with painful feet, every day since I was 14 years old.
No doctor could tell me the name of this awfull disease. My mother had it, and some relatives. But no-one knew what it was.
Most of all because no authority understood I had an “invisible” disability. I could not do what healthy people could do, but my incapacity wasn’t recognized by any medical organisation.
When I was 26, I did a genetic testing with the Pachyonychia Congenita Project and I finally got my answer. This thing had a name. And I was not alone!
I wish Authorities and Doctors knew more about PC. It would make life more easy and help patients get the physical, emotional and financial support they really need. And hopefully, one day they will find a cure.
This is my story. Thanks for reading.PCer, Alyssa Blocken
Post by PCer, Katherine: “This month is an extremely important month to me. It’s PC awareness month. I have posted a video (below) and shared some pictures (right) with y’all explaining what PC is and how it affects my life. I would be very grateful to you if you give it a watch. I will also be posting the PC Projects website in this post so you can go and check them out for more information on the different variations.”