'Having a visible difference helps me stand out'

A dance student who grew up with a visible difference has said "learning to love my skin instead of trying to hide it" helped her excel.

Scarlett Clarke, 20, from Gloucestershire, was born with congenital melanocytic nevus (CMN), a type of birth mark covering much of her back and part of her stomach, as well as small CMN "satellites" over the rest of her body.

Clarke said her CMN "won't hold me back; having the visible difference makes me stand out more, especially as a dancer".

She is an ambassador for charity Caring Matters Now, which supports babies, children and adults with CMN throughout their life.

CMN is a genetic condition consisting of a dark brown hairy birthmark covering up to 80% of the body. The condition can also grow internally, which in the worst cases can be fatal.

As an infant, Scarlett was put in touch with Caring Matters Now through Great Ormond Street Hospital, where she received care.

She said the biggest thing about a visible difference was confidence.

"Every time you go out, someone will look and someone will stare, so you are made aware from a very, very young age that you do look different."

She said she dealt with negative comments by understanding it was other people's "insecurity they're projecting, it's nothing to do with me, really".

Scarlett is running the London Landmarks Half Marathon on 12 April with five women, who were all born with CMN, to raise awareness of the condition.

She said support from her family, the dance community and the charity had helped her to feel confident to talk openly about her skin.

"Obviously, you have ups and downs, but I've been able to actually love my skin instead of trying to hide it," she said.

"If I don't think my skin's beautiful, how can I expect other people to think that?

"You have to really love it and embrace it."

Jodi Whitehouse, chief executive of Caring Matters Now, started the charity aged 17, after growing up believing she was the only person with CMN.

She said she met Scarlett as a one-year-old and is "humbled and proud" of her confidence and achievements.

The 45-year-old's CMN covers her back and wraps around her stomach.

"As a baby, it covered about 80% of my body and I have smaller birthmarks too covering the rest of my skin - sometimes referred to as satellites."

She was 16 before she met someone else with CMN. By then, she had had more than 30 operations at Alder Hey Children's Hospital in Liverpool.

"They tried to remove this big, dark, brown, hairy birthmark that doctors and nurses and midwives and every other healthcare professional had never seen before."

Growing up in the 1980s and 1990s, Jodi said people had less of an understanding of visible skin differences.

"Children were pulled away from me during swimming lessons or on a beach holiday, because their parents were unaware of 'what is this?' on this girl's skin."

She said she was three years behind in school after having taken time off for surgery, which left her feeling "isolated".

Aged 16, she was told by a consultant at Great Ormond Street Hospital her condition was called CMN and there were other people younger than her with the condition, so her family and her agreed to talk to them.

"The phone started ringing and hasn't stopped since. And that was how Caring Matters Now was formed 28 years ago," Whitehouse said.

"The support structure is massive now, with 900 families," she added.

Helen Stroud, 38, lives in Yorkshire and, until about seven years ago, believed she was the only person with CMN, before she found Caring Matters Now.

"It really was life-changing for me. I felt like I finally found my tribe, other people who understood what I'd gone through growing up, and it has massively changed my perceptions and my confidence about my skin," she said.

As a mum, she said although her children did not have CMN, she wanted to show them that "looking different is okay, [and] I want them to be proud of me. I don't want them to feel worried about it," she added.

Helen will run alongside Scarlett and Jodi, with their group for the London Landmarks Half Marathon, in backless tops.

She said while the race would be a physical challenge, showing her skin would be an emotional one.

"A lot of people who know me closely have never seen my back and the extent of my birthmark," she said.

Caring Matters Now has raised more than £1.7m to fund research at Great Ormond Street Hospital and the Francis Crick Institute, London.

They wanted to find the cause, but have developed a treatment with "exciting" plans for clinical trials next year, Jodi said.

Their research suggested CMN did not just impact people externally, but in some cases, could grow on the brain and spine.

There could be neurological complications that could come with that and, in some cases, people could die from the condition, Jodi said.

"The charity's support spans a wide spectrum of families who are affected by the condition and it can be debilitating for some," she added.

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