The experiences of individuals and families are touching and illustrate the complexities and effects of living with PC.
Still Fighting: Jane’s Story
Jane Santos lives in Fort Worth, Texas and has spent her entire life navigating the realities of pachyonychia congenita — as a patient, a mother of children with PC, and now a grandmother to the next generation. Her story is one of endurance, love for family, and a fierce determination to keep moving forward despite constant…
Generations of Strength: Astrid’s Story
For 22-year-old Astrid Santiago Santos, Pachyonychia Congenita (PC) is more than a diagnosis. It’s part of her family’s story. Astrid grew up watching her mother live with PC. One of her two older sisters has the condition as well. Today, Astrid is a mother herself, and her one-year-old son has inherited the same genetic mutation. Of her family’s five nieces and nephews,…
Astrid
My Story: Astrid Santiago Santos Generations of Strength: Astrid’s Story For 22-year-old Astrid Santiago Santos, Pachyonychia Congenita (PC) is more than a diagnosis. It’s part of her family’s story. Astrid grew up watching her mother live with PC. One of her two older sisters has the condition as well. Today, Astrid is a mother herself,…
Eunice
My Story: Eunice Living with PC What is it like to live with PC? Most of my life my PC determined what I could do. I wasn’t able to play any sports, had ongoing bealing fingers and toes. Was bullied in school until grade five, when we moved to a school where the other kids…
Ela
My Story: Ela Finding Her Voice: Ela’s Story of Growing Up with PC At first glance, Ela Kislal looks like a typical 17-year-old high school senior. She loves plants and considers herself a horticulturist. She paints, writes, plays the flute (by her own admission, imperfectly), and is proud to be the child of immigrants. She’s…
Jane
My Story: Jane Santos Jane: Still Fighting Jane Santos lives in Fort Worth, Texas and has spent her entire life navigating the realities of pachyonychia congenita — as a patient, a mother of children with PC, and now a grandmother to the next generation. Her story is one of endurance, love for family, and a fierce…
Dorinda
My Story: Dorinda Sharing my story for Rare Disease Day Dorinda has spent decades supporting her husband and children as they navigate life with pachyonychia congenita. As a spouse, mother, and grandmother, she has witnessed both the physical pain of PC and the emotional toll it can take on families — and the importance of…
Paul
My Story: Paul Sharing my story for Rare Disease Day Paul navigates the daily physical and emotional challenges of pachyonychia congenita. His story reflects the hidden toll PC can take on identity, relationships, and dreams — and the deep human desire for connection and acceptance. “People think you’re pretending… but you’re the only one who…
Bertha
My Story: Bertha Felix Sharing my story for Rare Disease Day Bertha Felix lives in California and has spent much of her life navigating the physical pain and emotional weight of pachyonychia congenita. Her story speaks to the hidden challenges of PC — and the power of knowledge and community in helping families move forward.…
Aurora
My Story: Aurora A história da minha pequena guerreira Aurora. Desde o dia em que ela nasceu, eu soube que minha filha era diferente, não no sentido de menos, mas de única.Ela veio ao mundo com as unhas amarelas, e os médicos acreditaram que fosse icterícia. Mas o coração de mãe sente o que os…
Niam
My Story: Niam Niam shares what it means to live, compete, and push forward while living with Pachyonychia Congenita As I stood barefoot on the pool deck, waiting for my heat to be called, I curled my toes inward, hoping no one would notice the thick calluses I could not hide. Before I even dove…
James
My Story: James Bullock In his messages, James reveals the unseen reality of living with pachyonychia congenita—and the quiet resilience it demands. It’s the kind of pain that doesn’t stay in one place—it claims territory. It starts as a sharp point, like a needle driven straight into a nerve, and then it blooms outward, flooding…
Vanessa
My Story: Vanessa Sharing my story for Rare Disease Day “Lvrai nom de notre maladie a été en 2007 grace a l’association le coeur au pieds. jusqu’a ce jour ma famille et moi pensions que nous étions les seul au monde car les médecins ne nous disait pas la vérité. Quand en 2007 nous avons…
Krew
My Story: Krew Sharing my story for Rare Disease Day Today is National Rare Disease Day which in our home, has become an incredibly important and transformative day for the Swoope’s. For those that are new and for those that have followed along, here is a brief overview and update on our Krew man. Our…
Eliza
My Story: Eliza Sharing my story for Rare Disease Day “There are many symptoms associated with PC, but I just want to touch on two aspects, invisible and unpredictable. 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…
Linnea
My Story: Linnea Sharing my story for Rare Disease Day When and how you were first diagnosed and how did that feel for you? As an adult. After being married and having 2 kids with it my husband wouldn’t give up. I’d long lost hope of finding anyone like me let alone a diagnosis with…
Raquel
My Story: Raquel Reis Sharing my story for Rare Disease Day “Tenho 54 anos e somente aos 44 anos descobri este programa e finalmente soube qual doença eu tinha. Eu achava que era a única e que herdei de algum antepassado. Foi uma luz, uma esperança de cura ou de pelo menos sentir menos dor…
Rachel
My Story: Rachel Gribbins Sharing my story for Rare Disease Day “I was first diagnosed with PC when I was a baby. My parents had no idea what was going on, my nails turned black, they started seeing all kinds of doctors and finally found PC Project. I have always felt embarrassed of my disease…
Briannan
My Story: Briannan Year-End Message to my PC Family Every step I take feels like walking on broken glass. That’s my daily reality as a mom living with Pachyonychia Congenita (PC). Three of my young daughters also have PC, so this condition touches nearly every part of our family life. Mornings are the hardest. Like…
Ashley
My Story: Ashley Sharing my story for Rare Disease Day “I was first diagnosed with PC at the age of 28. I was originally told our family had a different rare disease. Finding out I actually had PC was emotional. I was happy to finally have a clear diagnosis. To be honest, living with PC…
Linda
My Story: Linda Harvey Sharing my story for Rare Disease Day When and how you were first diagnosed and how did that feel for you? 2018 – I think was the year I was told my condition was pachyonychia, I was so pleased it had a name that I could now tell people I had…
Arthur
My Story: Arthur Living with PC at 9 years old My name is Arthur, I’m 9 years old and I have pachyonychia. I live in the city of Rio Paranaiíba – Brazil. My family managed to get my diagnosis very quickly, thanks to the Pachyonychia Project that carried out my testing with great responsibility. The…
Carlos
My Story: Carlos Sanchez I am optimistic about my son’s future because Didier has something I didn’t have when I was his age: PC Project. Making the decision to have children was extremely difficult for my wife and me…. I have Pachyonychia Congenita (PC), a rare disease that causes thick nails, calluses, and blisters on…
Olivia
My Story: Olivia Castro Lay I do not want people to look at my nails, I want them to look inside my heart. Desplácese hacia abajo para leer mi historia en español. Hello, My name is Olivia Castro Lay (PC-K6a) and I am 2 years old. As soon as I was born my mother and…
Diego
My Story: Diego Avila I was born with two teeth and with several nails on my hands and feet with dark color. My name is Diego Avila, I am 7 years old and I live in Valera, Venezuela with my parents and my 10 year old brother, Fernando. I was diagnosed clinically by a dermatologist with…
Coraline
My Story: Coraline My name is Coraline and I am almost one year old. I was born a healthy, normal baby. At 3 days old, just before leaving the hospital, I had just a touch of jaundice, but it wasn’t severe enough to need any sort of treatment. My skin and nails turned a bit…
Flynn
My Story: Flynn Brodie Flynn is such a happy-go-lucky, cheeky, typical little three-year-old boy who knows no difference in his life. My son Flynn was born at the very healthy weight of 9 pounds 5 ounces. Flynn and I spent three days at the hospital with no real issues until we came home. My daughter asked me…
James
My Story: James Wark James has felt a genuine bond of dedication and a feeling of warmth and love within the PC family. From a young infant, I knew I was different from the other children I was around. As a youngster, you know you’re different, but you don’t ask or say anything to anyone. You…
Catana
My Story: Catana Abundis Catana has learned to let the love for life blur out the pain. This is the truth—because of the pain, when my husband says “good morning baby,” I often want to cry. Then I see our beautiful sons (our rescue dogs) and his beautiful face and I think beyond the pain. I…
Sean
My Story: Sean Dempsey A cane and a wheelchair help Sean get around. When I was three days old, the nails on my feet and hands turned yellow. The pediatrician told my mother that it was because of a solution that was used at birth. They would grow out white. The day I was discharged from the hospital at…
George
My Story: George Brentnall George’s life with PC and pain I was born with PC in 1959 near Derby. My parents didn’t know at the time that I had PC, and they didn’t know it would be called PC, because it didn’t actually show until I was around 6 months old when the nails on both…
Kieren
My Story: Kieren Eyles Days and weeks are made bearable by people who understand, and by my knowledge that I am more than the pain. Check out Kieren’s account of his bike race from London to Edinburgh here. There’s something about writing about yourself; it can feel a little clumsy or foreign. I suppose that…
Mike
My Story: Mike McCullough No one knows what your pain feels like because you look like a normal person Living with PC – June 2020 From the time I was born, my mom and dad never tried to put the brakes on me in terms of walking, running, or playing games. We had a neighborhood…
Graham
My Story: Graham Tutt Loads and loads of pain Pachyonychia Congenita K6b N172 del What does this mean, loads and loads of pain,And pain again, again and again.Don’t let it show, be like all the rest, walk normal, that’s the best,Clench your fist and smile again and try to hide that awful pain. Mum I…
Jackson
My Story: Jackson Thomas Best reader in his class! Way to go, Jackson… My name is Jackson Thomas, I’m 12 years old and I have PC. PC doesn’t hold me back from doing things that I love. I play basketball with my best friends who don’t really ever notice my PC. I think that true…
Terry
My Story: Terry Good The pain that comes with PC ironically has a positive side I will be 69 years old on December 3 of this year. Except for a few months during my infancy, I have experienced PC pain every day of my entire life, including: Blistering of my feet from the shearing pressures…
Samuel
My Story: Samuel Ryland We met adorable Sam when still a baby Sam has been the star of PC Project since 2004 when we first met him in his stroller at a Patient Support Meeting (PSM) in Dundee, Scotland. He has a spontaneous mutation (the only one in his family with PC). Since that first…
Amanda
My Story: Amanda Guhabiswas Sharing my story for Rare Disease Day I knew I had PC since I was a child because my dad was a spontaneous case and was diagnosed before I was. As a child, it was still hard when people noticed my nails and asked what was wrong with them. It made…
Joshua
My Story: Joshua McPeak An active 8 year old, Joshua is learning how to avoid fingernail infections It took 2 years before we found out that I had PC and were introduced to the PC Project. We have learned a lot about PC and we have even had to teach my doctors about it since…
Tara
My Story: Tara Ataee A very high achiever, Tara wrote this for her college entrance essay “Life for me ain’t been no crystal stair,” a mother tells her son in Langston Hughes’ poem “Mother to Son.” This poem has influenced my life by inspiring me to never give up. When I was two, I was…
Graham
My Story: Graham Long Although his PC has been a lifelong challenge, Graham Long is moving forward with his goals. My name is Graham Long. I am 50 and have had PC all of my life. It has not been easy. School days were difficult, people continuously asking why do I walk with a limp and…
Eveline & Soe
My Story: Eveline Schloesser & Soe Mattijssen Soe and Eveline met at the 2012 Edinburgh patient support meeting. They had a wonderful time and became friends. And friends are important, because it is a hard life. But together they can make a difference. Eveline & Soe were interviewed in Huid & Haar Magazine to share…
Janice
My Story: Janice Schwartz Janice has a spontaneous K6a mutation of Pachyonychia Congenita. Janice married David Schwartz in 1993 and she is the reason that PC Project was organized. Dave and Jan have three sons, Sam, Nate and Spencer; and one daughter, Rebecca. Janice serves as PC Project Patient Advocate. She wrote the monthly “Life With…
Jack
My Story: Jack Padovano How PC Lives With Me When Mary asked me to talk about my life with PC, I thought, “what am I going to tell a room full of people who live with PC every day – something they haven’t heard before, or something they don’t already know?” So, and please forgive me…
Allison
My Story: Allison Block A very smart little girl! My daughter Allison was born September 17th, 2009. She was 8 pounds, 15 ounces and 21 inches long. She did well in the hospital and came home 2 days after she was born. Over the next few weeks, I noticed a white film at the back of…
