Rare Disease Day - 28th February 2015

Gemma’s Story

My name is Gemma, I’m 22, grew up in Cambridge but now living and studying in Brighton. I like travelling, music and hope to graduate as a doctor in a few year’s time. But if you meet me, you might notice something a bit different about me; I was born with CMN, in other words brown birthmarks of varying sizes all over my body. The main area is like an ‘inverse t-shirt’,covering the top part of my back and chest, half of my neck and the back of my scalp and ear. The rest of my body is covered in smaller marks. I like to joke that I’m a Dalmatian in disguise, but it has taken a while to get to the stage where I’m comfortable like that.

Growing up, although I was mostly a happy child I believed for a long time that I was simply from a different species. A lot of my early childhood was spent in and out of hospital; dermabrasion, tissue expanders, skin grafts… at times I felt like a human pin cushion and have been left with scars from cosmetic operations that are not routinely carried out on small children any more. Entering adolescence was especially hard for me. I stopped doing gymnastics and trampolining which I’d loved, partly out of reluctance to wear a leotard. I started wearing scarves and long sleeves even on warm days to cover my body, and god forbid any of my friends tried to invite me to the swimming pool. It was hard and I didn’t know anyone else with the condition. Through Caring Matters Now I was put in touch with other people like me, which helped to reduce the feeling of isolation. I became more confident in general and by the time I reached sixth form decided that I was going on a beach holiday to the south of Spain with my friends. Stepping out in a bikini seemed far more terrifying than it should have done, but actually, it was fine! Barely anyone even batted an eyelid and I ended up having a great time. Since then, I’ve enjoyed travelling a lot, and sometimes in the hot weather when I’m wearing shorts and t-shirts, people will even approach me to compliment the uniqueness of my skin or offer to buy me a drink! Of course I get my fair share of stares and ignorant comments too, but more and more I’m growing to appreciate the skin I am in.

This year, Jodi asked if I would consider becoming the Caring Matters Now adult support contact. I have attended the most recent adult support events and found it useful to meet with other adults affected by CMN, to share stories, and glean from the experiences of others. I know Caring Matters Now would like to develop the support offered to adults affected by CMN over the next few years, so I hope I can give help and advice in this respect. At the next adult support event, I would like to chat with those attending about possible ways in which we can develop the support offered to our adult members. Furthermore, if any of the Caring Matters Now adult members would like to get in touch and chat, you can contact me at gemma@caringmattersnow.co.uk. I’m looking forward to taking on this new volunteering role and I’m excited for what the future holds.

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