Hi, I’m Stacey and I was born with a large bathing trunk nevus and multiple satellites all over my face and body. Despite being different to other kids I had a really good childhood and I owe so much of this to my parents. Mum and dad never treated me any different. We went on holidays and did all the normal things a family would do and when asked the question they would simply say “They are his birthmarks”, “He was born that way”. The more normal they made it seem the less interested people became, and people just accepted me for who I was. Because I was happy my parents had always said a firm NO to the idea of me having any surgery to remove any birthmarks for which I am eternally grateful. We would visit dermatology once a year to get checked over but that was it.
Around the age of 18 I started to get really good at golf. My dad was a keen sportsman and he always encouraged me to try all sports, but this game was different. It was the one I had a passion for and what I wanted to do as my career. I worked as hard as I could and in 1994 became a member of the Professional Golfers Association. Since then I have coached thousands of golfers from complete beginner to elite level. My job is very rewarding, and people often remind me how lucky I am to do something that I enjoy so I intend to carry on coaching for as long as I can.
So, the years have passed, and I have my own family now and one of the questions I always asked myself was what would happen if I had children. Would they have the same skin as me? What would happen if they did? In 2008 my daughter Lucy was born, and she has completely normal skin. I probably should have researched it but even with myself I’d never really bothered to try and find out about my marks; it was just who I am.
That all changed in 2019 when out of the blue I started to receive text messages and calls about an exhibition in London with people who had the same skin as me. This is when I heard the name CMN for the first time. They were on BBC, Sky, all the social media outlets. I’d never seen anybody else like me before so to see them in an exhibition was mind blowing. I just had to go and see for myself. I visited the ‘how do you C Me Now?’ exhibition and met so many wonderful people. It was very emotional and as soon as I left, I called my parents to arrange a date for them to visit. We returned on the final day and shared stories with other families and made contacts and I became a member of Caring Matters Now.
The Caring Matters Now Conference in the summer of 2019 was another defining moment for me. I got to spend time with other adults and children with CMN and their families. We attended workshops with doctors, received the latest updates on research and developments and most importantly just chat about our experiences. I have made a new group of friends that really are now friends for life.
Attending the exhibition and being part of Caring Matters Now has had such a positive impact on my life. 2019 is a year I will never forget.
Stacey
