Hi, my name is Amy, and I was born with giant bathing trunk CMN along with hundreds of satellite moles. I’m now 32 but back when I was born in Adelaide, Australia my condition was very unknown, and it was difficult for my parents to find out much information about it. I spent the first few months of my life in hospital having several dermabrasion procedures and surgeries to remove as many moles as possible in the hope of reducing any melanoma risk and lighten the areas of my birthmark. In the end they stopped continuing with more procedures as it was very distressing and there was no known benefit or positive outcome.
I grew up knowing my skin looked different to others, but it never got the better of me. I lived a very happy and healthy childhood and was lucky enough to experience very little bullying.
When I got further into my teens and early adult years I did struggle with some self-confidence and always felt like I had to explain why my skin looked different. Although my satellite moles are spread all around my body, my birthmark only covers my torso and top of my lower body, so it is not overly visible in everyday life. Whenever I would meet and get close with someone, I always felt like I had to tell them this big secret. I remember I would say things like “oh this is just my birthmark, it’s fine” and I remember most people would always just say “that’s cool” or they’d point out birthmarks or moles they had. When I first met my now husband, I started to explain my CMN to him and he just said, “why are you trying to explain it, it doesn’t make a bit of difference to how I see you”. I’ve always found Dr Seuss words to be true “those who mind don’t matter and those who matter don’t mind”.
As I got older, I found it hard to relate to other women as there were never any that looked like me and it wasn’t until I was much older in my 20s that I decided to go looking. I was so surprised to find there were in fact so many people with CMN let alone some with the exact same bathing trunk as me.
Since discovering Caring Matters Now and the other amazing support networks around the world it has really opened my eyes to the importance of spreading awareness and education around all things CMN. It has inspired me to share my story and become more connected to others in the community as I know how much being able to relate to another person or family can help. I know that if my parents had a resource like Caring Matters Now they would have felt a million times better and less alone and I’m sure that adults and parents of babies, kids, teenagers with CMN can find the answers and support they are searching for in Caring Matters Now.
