Emotional, Empowered and Excited

My experiences of living with CMN

I was born with CMN covering most of my back and several more CMNs on my legs too. Throughout my childhood I often faced tough days with being stared at and called names on the school playground. Those early years were difficult; I can remember often crying, wishing and praying that I could have skin like everyone else. Yet, I am immensely grateful to my parents and my brother who loved and supported me throughout my childhood.

As the years went by, I met my now husband who loved and accepted me. As an adult, life seemed much easier; although I am still conscious of my birthmarks at times as I don’t want to make other people feel uneasy. That feeling of embarrassment is certainly lessening the older I get.

As a result of living with CMN I have developed a strength of character which has helped me work through difficulties and it has certainly made me more empathetic towards others who have struggles. In my career as a dentist, I treated patients who had challenges in receiving dental care for either physical or psychological reasons. Having an empathetic approach to my patients was a real help in some very challenging situations!

How do you C me now? Photographic Exhibition in London

Last year (2019) was significant for me and it all began with a phone call from my Dad early one morning. He had seen an interview on the BBC Breakfast programme with Lucy and Fay talking about the ‘how do you C me Now?’ exhibition at the OXO Tower in London and Fay’s experience of living with Congenital Melanocytic Naevi (CMN). Following the call from my Dad, I knew I had to go and see the exhibition for myself. My husband and I decided to take a detour to London on the way home from a holiday in Norfolk, so we could visit the exhibition.

At that time, I was nearly 57 years old and I had never met anybody with massive birthmarks like mine before; so to be standing in a gallery space looking at photographs of 30 different people from all over the world who had CMN like me was very emotional. Some of the birthmarks were different to mine in size, shape and position, yet some were very similar. The photographs were beautiful and everyone looked stunning. The strap line of the exhibition “love the skin you are in” really struck a chord with me and something incredibly powerful happened inside me that day; a day I will never forget.

Attending the Caring Matters Now conference last year

After visiting the ‘how do you C Me Now?’ exhibition, I became a member of the charity Caring Matters Now and with my husband attended their conference last year. It was a wonderful experience. I met lots of people of all ages who have CMN; hearing their personal stories and seeing the children and young people accepting their CMN was really encouraging. It was exciting to hear what a difference the Caring Matters Now charity had made to the parents of children with CMN and, making new friends and having fun together was great too.

It was interesting to learn about the CMN research work. Finding out that CMN is caused by a gene mutation and the researchers are working on developing a cure was fabulous! Prior to having our children, the best medical reassurance my husband and I received was the news that our children would ‘unlikely’ have a similar skin condition. As soon as our two children were born, I wanted to know that their skin was normal before finding out what sex they were! Thanks to the CMN research we now have a better understanding of CMN, so no one needs to have that uncertainty and moreover, parents can be reassured that they didn’t do anything to cause their child to have CMN.

The difference Caring Matters Now has made to me

In conclusion, I want to say a massive thank you to all involved in Caring Matters Now. Knowing that I am not alone and seeing the confidence of the young people living with CMN has been empowering. Almost straight after attending the CMN conference, I became less bothered if, by chance, my t-shirt lifted up slightly to reveal my CMN and, I have been much more open talking about my CMN to friends.

I am so thrilled that there is a charity to support those living with CMN and especially for parents of children with CMN. As I know from my own experience, the way parents support their child with CMN is vitally important. I will continue to fundraise for Caring Matters Now and am so looking forward to this year’s conference.