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Photography exhibition featuring people with rare skin condition seeks to challenge conventional perceptions of beauty

Congenital Melanocytic Naevus is rare and untreatable. Credit: Brock Elbank/Caring Matters Now

A photography exhibition featuring people with a rare and untreatable skin condition that presents as large, dark brown birthmarks which can cover up to 80% of the body is seeking to challenge conventional perceptions of beauty.

A series of 30 portraits showcases people with Congenital Melanocytic Naevus (CMN), a condition which is not inherited and is instead caused by a mutation in the NRAS gene.

Due to the rarity of the condition - single small CMN are found in 1% of all newborn babies, while large or very numerous CMN are rare, occurring in around 1 in 20,000 births worldwide - people with it can feel isolated and face negative comments about they way they look, causing them to lack self-confidence.

HOW DO YOU C ME NOW? aims to not only increase the confidence of those with the condition, but also challenge conventional perceptions of beauty and show that "visible differences can add to beauty rather than detract from it".

Many of those photographed as part of the exhibition had never revealed their birthmarks publicly before.

The images of the 30 people from 13 different countries across five different continents were taken by photographer Brock Elbank who focuses on specific physical features.

HOW DO YOU C ME NOW? launches at the Oxo Tower Wharf, London on Wednesday, March 13, with doors opening to the public the following day at 10am.

Admission is free and the exhibition, which is funded and supported by UK CMN charity Caring Matters Now, will run for 10 days.

Some 30 people were photographed for the CMN exhibition, some of who had not revealed their birthmarks publicly before. Credit: Brock Elbank/Caring Matters Now

These are the stories of four of those featured in the exhibition.

  • Alkin Emirali
Alkin Emirali was born with a few prominent moles on his face that have proliferated throughout his life. Credit: Brock Elbank/Caring Matters Now

"It might sound off to say it... but I don't notice my CMN," Alkin Emirali - who was born with a few prominent moles on his face that have proliferated throughout his life - says.

"It’s not part of my everyday experience.

"As an adult, I rarely get challenged about my visible difference.

"People sometimes stare, I usually just stare back and then they stop.”

Alkin, a screenwriter, director, lecturer and an established martial arts instructor, never met anyone else with CMN until he was in his late-30s, but says he wishes he had seen an exhibition like HOW DO YOU C ME NOW?when he was a child as "to have seen other faces like mine in the world would have been awesome".

Alkin continues: “My visible difference has defined who I have become on every level, and since I like who I am, I guess I wouldn’t change anything."

  • Gemma Whyatt
Gemma Whyatt says she is 'growing more and more to appreciate the skin I'm in'. Credit: Brock Elbank/Caring Matters Now

When Gemma Whyatt was growing up, she believed she was "from a different species" to everyone else due to CMN covering the top part of her back and chest, half of her neck and the back of her scalp and ear, along with smaller birthmarks over the rest of her body.

Now, at the age of 22, Gemma says she is "comfortable" about the way she looks, but admits it "took a while to get to that stage".

For many years, the aspiring doctor wore long-sleeved tops and scarves to hide her skin, avoiding swimming, and gave up gymnastics and trampolining - sports which she loved - to avoid wearing leotards.

Through Caring Matters Now, Gemma met others with CMN and began to feel "less isolated", even going on a beach holiday with friends.

While the Brighton student finds she sometimes gets "ignorant comments", she also gets complimented on her "uniqueness", helping her to "more and more appreciate the skin I'm in".

  • Agnieszka Pałyska
When Agnieszka Pałyska was little, some parents would not let their children play with her because she was 'different'. Credit: Brock Elbank/Caring Matters Now

When Agnieszka Pałyska was growing up in Poland, some children were not allowed to play with her because she was "different", while others would stare at her as they got changed for PE lessons and gossip about the way she looked.

While this doubtlessly affected her confidence, the 32-year-old credits her parents for the "loving" and "supportive" way in which they brought her up, meaning that her childhood was "happy" and helped her build self-awareness, confidence and self-acceptance.

Between 50% and 60% of Agnieszka's body, including her neck, chest, back and left arm to shoulder are covered in CMN marks.

She also has a large number of smaller CMN marks covering the rest of her body.

While Agnieszka says she often faces stares and questions over the way she looks, she says she has "learnt how to deal with countless comments, criticism of my appearance and overreactions.

"Also, it has taught me how to respond with a smile to other people’s questions and looks, and basically, I have learnt to keep my self-confidence.

"CMN is just a visual aspect of my appearance but not the essence of my life.”

  • Callum White
When Callum was younger he would explain to other children that his CMN was 'just a birthmark'. Credit: Brock Elbank/Caring Matters Now

As 17-year-old Callum White became older and more aware of his CMN he says he found it more difficult to join new groups of friends, but says that once he explained "it's just a birthmark" to other children, "they just got on with it".

The student was born with CMN covering the whole of his right arm and hand, along with smaller marks on the rest of his body.

Callum was an active child, with a passion for running, climbing and cycling, which often involved many scrapes, but due to the fact that CMN can be more fragile and tear more easily than other types of skin, his skin would break more easily and require bandaging.

  • Does having CMN affect a person's health?
CMN is rare and untreatable. Credit: Brock Elbank/Caring Matters Now

On the whole, no, but those with large and numerous CMN have a 10% increase compared to the rest of the population of developing malignant melanoma, and this peaks during childhood.

Melanoma is a cancer of melanocytes, the skin cells which produce pigment and which make up CMN.

However, when someone with CMN develops a malignant melanoma it tends to be aggressive and difficult to treat.

Potentially it can be fatal.

An elevated risk of skin cancer is not the only health issue.

Problems in the brain and spinal cord are the most common complication seen in children with CMN.

The pigment cells of the skin and the brain develop from the same cells in an embryo, and as a result children with CMN can have differences in their brain or spinal cord.

The most common problem is pigment-containing cells (a bit like a CMN) in the brain or spinal cord.

This is called “neuromelanosis”, or “neurocutaneous melanosis" and can cause fits (convulsions), developmental delay, or problems with their limbs.

Support and more information on CMN can be found on Caring Matters Now's website.