When I was diagnosed with Gorlin Syndrome, I was just a kid. I didn’t know what to think. I knew it wasn’t cancer or a big-time sickness. All I knew was I had “it”. For a pretty long time, I was scared. I had never heard of BCCNS, so I didn’t know what it could do to me. What would people think of me having it? Would my friends still want to be my friends and play with me? What would happen to me?
“What’s wrong with your baby?” Mom often heard from the mouths of curious, but ill-mannered children; or from the eyes of curious, but afraid to ask adults. Defensively she would say, “Nothing. What’s wrong with you?” Admittedly, there was something different about me. At the time, we did not know what.
My name is Margaret Emery. I live with my husband Paul and our two sons Damian (who has Gorlin Syndrome) and Simon in Highbury; a suburb of Adelaide, South Australia in Australia. This is our story…
My name is Annewil, I am 30 years old and live in The Netherlands. In 2010 at age 27 I learned that I had Basal Cell Carcinomas (BCCs). Two ‘normal’ moles were removed for ‘cosmetic’ reasons according to my doc and turned out to be BCCs. My gut feeling knew all along that there was something wrong. As long as I can remember I have had these pits on my hands, which turned out to be the ‘famous’ palmar pits.
Being the spouse of someone with BCCNS (or any other condition for that matter) can be a challenge. I do not mean to imply for a single second that I regret having Christen as my wife. I don’t. She was chosen by God for me, and I am grateful. She is the best decision I ever made. What I mean is that her having BCCNS spotlights my own shortcomings. I freely admit that I am terrible at recognizing that sometimes, she just wants me to listen. To truly listen. And to only listen. It is at those times that I realize my real role is to sometimes just support her. Our journey over the past four years has taught me that.