“What people don’t see is…”
Every day, people living with Pachyonychia Congenita (PC) hide pain, limitations, fear, and exhaustion that most others never see. This PC Awareness Month, we’re inviting patients, families, caregivers, and supporters to help make the invisible visible by sharing one simple truth: “What people don’t see is…” Explore stories and videos from across the PC community, upload your own reflection, and help raise awareness for this ultra-rare disease and the urgent need for better treatments and a cure.
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Featured Stories
“What people don’t see about PC is the planning behind every step.
I am the fifth generation in my family to have Pachyonychia Congenita (PC). June is the awareness month for this mutation. ❤️
People see my nails, feet, and skin, but no one ever sees the mental load I carry to limit the daily pain associated with PC. I need to always plan ahead for any walking I’ll have to do in a day, sacrifice certain activities to protect my feet, and manage my time when walking (e.g. sprinkling in sitting breaks). In doing this, I have become very in tune with what I need to do to reduce pain, and often have to enforce hard boundaries if I cannot do something. It’s exhausting to always keep track of myself in this way, but I do such a good job that the average person would not even guess that I have a walking disability!
Having an invisible walking disability makes it hard for me to ask for help when I have bad days/weeks/months of walking. I can’t quite place why I have this invisible barrier or how to remove it. I feel like a fraud when I use wheelchairs or scooters, and like an imposter when I discuss my trouble walking in detail. It’s as if the effort it takes for me to have help is not worth making the invisible disability visible. I have been working hard to break out of this mindset this past year by reminding myself that the benefit of no pain outweights all.
Everything that I know about pain prevention and management comes from my strong and beautiful mother. The only reason that I walk today without much pain is because she had to learn the hard way much later in life how to avoid extreme pain. Words cannot express how much I love and admire her. I owe everything to my family members with PC that came before me for paving the way, and to PC Project for uniting a community of people who are just like me. ❤️”
Katelyn
“What people don’t see are the masks we wear every day just to appear normal, even though it costs us immense strength and constant pain. They don’t see the plans we cancel—not because we don’t want to go, but because every step and every minute of standing comes at a price.”
Cornelia
“What people don’t see, and that is hard to explain, is why I can’t walk to my work, which is only 400 meters away, and why I choose to go by car. People often wonder why. Often they don’t ask me, but I can see the question in their eyes and head”
Karin
“What people don’t see is me fighting through the pain everyday to live a somewhat “normal” life.”
Briannan
“What I wish people could see or know about PC is that every single day I plan around the pain in my feet. What shoes can I wear with what clothes so I don’t look weird. A dream I have is to walk in the grass barefoot just one time. It sounds like a simple request, but with my PC I can’t even imagine myself doing that. I have to wear shoes 100% of the time, just to walk anywhere.”
Diane
“Having to consider every step which means I have to miss out on a lot of fun with friends and family, most importantly it limits how I can play with my daughter – she would love me to join her running around games”
Kate
“What I wish people could see or know about PC is the things I had to quit….Doing sports, wearing high heels, stadium concerts, window shopping, long walks, mountain hiking, swimming pool, teaching your own son how to ride a bike, and so on and so forth. Obvious for other people, unbearable for me…”
Aleksandra
“It’s what you don’t see hurts. The pain of just trying to have fun.”
Dorinda
“What people don’t see about PC is that I have been trapped in my house since my childhood, terrified of going outside. My life feels detached from reality; I feel like I am just surviving, not living. When I have to go out, I force myself to walk normally just so people won’t stare at me. I am screaming inside from the pain, but putting on that mask burns my feet beyond words. And the torment doesn’t end that day; I suffer for days just for spending two days outside. When I was a kid, I could at least run a little. Now, if a dangerous situation happens, I can’t even run away; I would just have to accept whatever happens to me. This is the invisible prison of my life.”
Muhammet
“What people don’t see is that I am often fine in the morning. I always have some pain. But in the mornings, I might still be able to walk two miles, while it would almost never be possible in the afternoons.”
Paul
“I’ve often said that if an adult person suddenly had this condition, he or she would probably be unable to walk. I think we only persevere because, over the years, we are conditioned to the constant pain, not unlike people who have other permanent conditions with which they are forced to deal.”
Gary
“The unpleasantness it causes the disruption the not being able to do or wear nice shoes like other people. I have to wear special shoes because it’s in between my toes as well so normal shoes don’t work. Being bullied at work because of this laughed at made to look stupid this is something I wouldn’t wish on anyone.”
Patricia
“What people don’t see is the pain and frustration behind an innocent smile. They don’t see the embarrassment and low self esteem that a 3.5 year old experiences based on self reflection. They don’t see the hidden message behind every “do I look cute?” because she sees she what everyone does see. Physical differences. They don’t see the resilience and perseverance PC patients must possess to navigate a life that appears simple to most. They don’t see PC for what it is; a debilitating, controlling and life altering disease.”
James
“What people don’t see is the reality of living with something so rare, yet so heavy and painful.”
Kali
“What I wish people could see is the pain in my daily life and how it controls my decisions, my social life, and my whole self, and I cannot do anything to change it.”
Karin
“What people don’t see is that ‘normal’ comes at a cost — and it’s a cost I pay every single day.”
Jack
“What people don’t see are the things PC stops me from doing.”
Phil
“Lo que ves es el resultado de mi resistencia y adaptación, pero lo que la gente no ve, es el esfuerzo monumental y diario que se requiere para intentar tener una vida lo más normal posible. Mi enfermedad no es solo un trastorno físico, es una maratón diaria que se corre en silencio y paso a paso con dolor constante.”
Pamela
Translation: “What you see is the result of my resilience and adaptation, but what people don’t see is the monumental, daily effort required to try to live as normal a life as possible. My illness isn’t just a physical disorder; it’s a daily marathon run silently, step by step, with constant pain.”
“What people don’t understand is the constant state of feet pain.”
Sue
“If I could make one thing visible to the world about PC it would be the pain.”
Kali
“Most people just see me sitting, but they don’t see the constant decisions happening in the background just to manage pain and keep going.”
“What people don’t see is that even after decades, I still remember what my bullies called me.”
Katri-Anna
“What people don’t see is the planning, work, and struggle that goes into my day for the chance that I can reduce the pain even a little.”
Jim
“What I wish people could see is the uncertainty not knowing what the future holds for your child facing a possible lifetime of physical pain.”
Aaron
“People often don’t see how much work goes into caring for someone with PC.”
Kaitlyn
This disease is painful, and sometimes pain cannot be seen.
Images from Kaitlyn of her son, Krew.
“What I wish people could see is all the unspent energy I have inside me. The hikes I’ve missed. The workouts I’ve skipped. But most of all, not being able to run the basketball court with my kids and having to settle for a game of HORSE.”
Amit
“Why Awareness Matters”
Why Awareness Matters
Pachyonychia Congenita (PC) is an ultra-rare disease, which means most people — including many doctors — have never heard of it. That lack of awareness can leave patients and families feeling isolated, misunderstood, and alone for years before finding answers or support.
Awareness changes that.
Awareness helps families find answers faster.
Awareness helps patients feel seen and supported.
Awareness helps doctors and healthcare providers better understand PC.
Awareness brings attention, funding, and momentum to research efforts.
For ultra-rare diseases like PC, awareness is often what creates the pathway toward scientific collaboration, clinical trials, better treatments, and ultimately, a cure.
When diseases remain invisible, the people living with them are often overlooked.
That’s why making PC visible matters.
