As Scarlett Clarke entered the world and took her first breath, it wasn’t met with excitement as expected.
Instead, the feeling of fear flooded across everyone’s faces, wondering why she had multiple brown marks across her body, one of which stretched across the entirety of her lower back.
When Scarlette Clarke was born, her parents were terrified and doctors thought she might be contagious Credit: Jam Press
She was born with a rare genetic condition that causes brown birthmarks all over the body Credit: Jam Press
Scarlett, now 20, was diagnosed with congenital melanocytic naevus (CMN); a rare genetic condition that affects just one in 10,000 to 20,000 births.
It presents as dark and often hairy covering up to 80 per cent of the body.
But it can also go beyond the skin. Pigment-producing cells can develop inside the brain or spinal cord.
Scarlett, however, doesn’t have such issues.
“Some people ask if I’m OK as they think I’ve fallen over in mud,” the student, from , told .
“And some children will come up to me in public and ask what’s all over my body.
“But it’s from a place of genuine concern and curiosity, so it doesn’t bother me.”
It took a while for Scarlett to get her diagnosis.
Some people look at Scarlett’s birthmarks and ask her if she has fallen in the mud Credit: Jam Press
Scarlett’s largest birth mark stretches across the entirety of her lower back Credit: Jam Press
When she was a baby, her parents were “terrified”, saying “doctors and midwives didn’t have any idea” of what condition Scarlett had.
They didn’t know if it was something that could spread or worsen.
That was until Scarlett was four months old, and her godmother came across an advert in a magazine asking for babies born with certain birthmarks to get in touch with a specialist at Great Ormond Street Hospital (GOSH).
It was from then that Scarlett’s family got more information.
Initially, doctors had feared she might be contagious, though testing confirmed this not to be the case.
Scarlett, who is the youngest of three, is the only person in her family with the condition.
It was found that it ran only skin-deep – for some people, CMN is more than just a .
The condition can affect bodily systems beyond the skin, causing neurological problems, for example.
Doctor’s had no idea what was wrong with Scarlett when she was first born Credit: Jam Press
Scarlett eventually saw doctors at Great Ormond Street Hospital at around four months old and it was there they realised she had CMN Credit: Jam Press
It has an increased risk of , the most deadly form of .
Because of this, Scarlett must be careful in , though she still manages to enjoy herself like everyone else.
She said: “I still go round in a bikini, but I need to stay in the shade and wear a high-factor .
“If I go out in peak hours, then I put a rash vest on.”
Up to 80 per cent of Scarlett’s body is covered in the birthmarks, which are hairy.
While she’s naturally blonde, the patches are covered in dark ‘horse-like’ .
Her condition means she has an increased risk of skin cancer, so she has to be very careful in the sun Credit: Jam Press
Despite being visibly “different” to others, Scarlett was luckily never bullied about her condition Credit: Jam Press
She shaves the ones on her legs, but only trims the one on her back.
Even though people used to stare, and parents used to be cautious, Scarlett never suffered any instances of .
But she still struggled being visibly “different” to others; until she came across Caring Matters Now.
The , of which she is an ambassador, provides personal and compassionate support for anyone affected by CMN.
It raises awareness and visibility of the condition, including among medical professionals, so that families who have a baby born with CMN do not face the same experience, and fund pioneering research to improve understanding, care and treatment.
Scarlett said: “I used to carry leaflets around with me about it.
“I’d hand them out to the kids in school if they looked at me a bit funny or asked what was on my body.
“Over time, people stopped asking, as I had already answered everything they needed to know.
Scarlett is now an ambassador of a charity which provides support for anyone with CMN Credit: Jam Press What is congenital melanocytic naevus?
Congenital melanocytic naevus (CMN) is a brown birthmark that is almost always present from birth.
Single small CMN are relatively common and are found in 1 per cent of all newborn babies. But extensive CMN are much rarer, occurring in around one in 10,000-20,000 births.
It is estimated there are around 6,000 babies born with a small single CMN in the UK every year.
CMN can be on any part of the skin, including the palms of your hands, soles of your feet and scalp, as well as inside your mouth.
They are usually a shade of brown or black, but sometimes can be more reddish.
Hair usually grows out of CMN and the hair colour can often be darker than the child’s hair colour on their head.
Health issues from CMN
The presence of the CMN interferes with the development of the layer of fat and sometimes also the muscle bulk that is normally present. This can result in the CMN appearing to be depressed below the general skin surface.
In terms of neurological problems, issues in the brain or spinal cord are the most common complication seen in children.
Pigment-containing cells can form in the substance of the brain, and benign brain or spinal tumours can also form, although this is more rare. Other rare complications include too much fluid in the brain or an abnormal brain structure.
People with CMN have an increased risk of getting melanoma, the most serious form of skin cancer. Because of this, sun protection is essential and the sun should be avoided at peak times of the day, if possible.
Source: Caring Matters Now
“So many people cocoon themselves, but having the support of Caring Matters Now has helped me to take a deep breath.
“I’ve been able to show parents of kids with this condition that it does work out – and they will be able to have a normal life.
“I was upfront about it all with my current boyfriend and he’s very supportive of me.
“My attitude is that if you hide it, then it shows you’re ashamed of it.
“But you shouldn’t be, as it’s a part of you and is something to embrace.”
Eze Chidiebere Paul
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