Most people who know me don’t know this about me:
I have a rare, painful genetic skin disorder called Pachyonychia Congenita (PC). I’ve lived with it my entire life—and for most of that time, I kept it quiet.
On my best day, I can walk down a city block without thinking about my feet.
On my worst day, I refuse to walk at all.
Unfortunately, those “best days” are rare—maybe once a month if I’m lucky. Most days, I feel pain with every single step. Even standing still hurts.
People often ask what PC feels like. The closest I can describe it is this: imagine pins and needles being driven into the bottoms of your feet—but deeper, all the way to the bone. That’s my daily reality.
To manage the pain, I soak my feet in hot water, then cold. I elevate them. I rub in creams, coat them in Vaseline, take Advil—and if I’m being honest, I do a fair amount of muttering and cursing under my breath. Once a week, I carefully pare down thick calluses, trying to avoid tiny blood vessels and nerve endings that can bleed and flare instantly.
None of it really works. The pain is always there.
Living with PC doesn’t just hurt physically. It wears on you emotionally, too. Some days, the constant pain makes me short-tempered with the people I love. Other days, it pulls me into periods of real sadness and isolation.
PC also affects my fingernails and the way I walk. As a kid, that made me a target. Other children teased me relentlessly. Some even stomped on my feet until I collapsed in agony. If you have PC, you know—the last thing we need is more trauma to our feet.
When I was diagnosed, my parents were given a name for my condition—but no treatment, no roadmap, and no cure. Doctors told them it would likely get worse over time, maybe even to the point where I wouldn’t be able to walk. My mom blamed herself for years. We know now it wasn’t inherited in my case—it was spontaneous—but at the time, we were left with fear and unanswered questions.
As an adult, the bullying stopped. The questions didn’t. For a long time, I stayed silent about PC. I didn’t want to explain. I didn’t want to be different.
That changed the day I stood in front of the FDA and told them what it’s really like to live with Pachyonychia Congenita—the pain, the isolation, and the strength it takes just to keep going. My voice shook, but I spoke anyway. Because staying silent meant nothing would change.
That moment changed my life.
Today, I serve as Board Chairman of PC Project, the only nonprofit in the world dedicated solely to helping people with Pachyonychia Congenita. For the past eight years, I’ve worked alongside patients, families, clinicians, and researchers to connect our community, support research, and make sure no one faces PC alone.
On Rare Disease Day, I’m sharing my story because awareness matters. It matters for the child who doesn’t yet have a diagnosis. It matters for the parents searching for answers. And it matters for the researchers and doctors who can help move us closer to better treatments—and one day, a cure.
PC may be rare. But the people living with it shouldn’t be invisible.
Thank you for taking the time to hear my story—and for helping shine a light on Pachyonychia Congenita.
