Patient Stories

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 my pediatrician Dr. Fabiola observed something … [Read more...] about Olivia Castro Lay

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 Pachyonychia Congenita at 3 … [Read more...] about Diego Avila

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 yellow, but nothing out of the ordinary … [Read more...] about Coraline

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 … [Read more...] about Flynn Brodie

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 just get on with … [Read more...] about James Wark

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 think beyond the … [Read more...] about Catana Abundis

Cane and 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 … [Read more...] about Sean Dempsey

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 my hands and feet began to thicken. By … [Read more...] about George Brentnall