Rare skin condition gives 9-year-old girl skin like K-Pop Demon Hunters character

Rare skin condition gives 9-year-old girl skin like K-Pop Demon Hunters character


SINGAPORE – Where the marks on Rumi from Netflix’s animated film K-pop Demon Hunters are purple, those on nine-year-old Phoebe Hu’s arms and body are light brown.

As a result, she is often bullied in school, with her schoolmates making unpleasant remarks about her skin.

Often called “cafe au lait” spots by doctors, the flat, light-to-dark brown birthmarks that resemble “coffee with milk” on Phoebe’s skin are the underlying signs of a genetic condition known as neurofibromatosis type 1 (NF1).

NF1 causes changes in skin pigment, including flat, light-brown spots and freckles on the armpits and groin. It also causes the growth of benign, slow-growing tumours that develop on or under the skin from nerve cells. These tumours, called NF tumours, can appear as soft lumps throughout the body.

Phoebe’s condition was discovered when she began having pain behind her right ear around March 2023, her mother Pearlyn Goh, 42, said.

She was brought to KK Women’s and Children’s Hospital (KKH), and an MRI scan, three doctors and a genetic test later, Phoebe was diagnosed with NF1.

“Apart from the brown spots on her arms and parts of her body, the scan also showed that Phoebe has a tumour behind her right ear and another near her brain stem,” Madam Goh said.

She told The Straits Times that her research revealed that children with NF1 often have special needs related to learning, such as difficulties with attention and memory. However, Phoebe does not exhibit these difficulties, which is a relief, she shared.

Dr Nikki Fong, a geneticist with KKH, explained that there is a 50 per cent likelihood of NF1 being passed on if one parent has it.

“It can also occur spontaneously from a new gene change,” she said, referring to what is also known as gene mutation.



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