Piebaldism gives them the X-Men factor

by Judith Tan

Published on Straits Times on 5 April 2025

SINGAPORE – Toddler Mohamed Zain Azharuddin was born with a white forelock and patchy skin, giving him a passing resemblance to Marvel Comics’ X-Men character Rogue.

But like any three-year-old, his superpower is to be unfazed by curious looks.

His confidence also stems from his father, Mr Azharuddin Mohamed Naseem, 37, who bleached his forelock to twin with his only child.

“I never wanted my son to feel alone in this,” said Mr Azharuddin, a director of a construction company.

“Zain was two when I carried him in front of a mirror. He touched his white forelock, then my dark hair. His confused expression broke my heart. That’s when I knew: My forelock would be white too. Now when strangers see us, they would say ‘like father like son’.

“I usually smile and explain that actually, this father chose to follow his son. It’s become a wonderful way to normalise his condition while creating special bonding moments between us,” he told The Straits Times.

Zain was born with a rare genetic condition called piebaldism, in which areas of skin and hair appear lighter than normal because of the absence or loss of pigment. Apart from his white forelock, he also has white birthmarks on other parts of his body, including his arms, stomach and legs.

“We weren’t entirely surprised because my wife’s family has a history of piebaldism, and we knew there was a possibility Zain could have it. However, as her relatives have smaller, more limited patches, with only one having a white forelock and a white patch on the forehead, we were not fully prepared for how widespread Zain’s birthmarks would be,” Mr Azharuddin said.

Like Zain, Stefanie Dowideit, 17, also has the condition, while her fraternal twin sister, Melissa, does not.

“I have always realised that I looked different from my sister,” said the St Andrew’s Junior College student.

“To me, it doesn’t matter that we look different, because it doesn’t change the fact that we are sisters.”

Piebaldism affects fewer than one in 20,000 individuals, but this “varies from race to race”, said Associate Professor Mark Koh, who heads the department of dermatology at KK Women’s and Children’s Hospital.

It is caused by a mutation in a gene which produces a protein that is important for the development and migration of pigment cells to the skin.

“The mutation can be inherited from a similarly affected parent or, sporadically, without a parent who is affected,” said Dr Koh. 

Piebaldism is characterised by the absence of melanocytes – the cells that produce and contain the pigment called melanin – in patches of skin and hair, and nine in 10 people with the condition have a white forelock.

“It has no other systemic effects,” Dr Koh said.

But he advises parents to prevent excessive sun exposure for their children, which could lead to sunburn on the unpigmented areas.

“If patients are affected cosmetically when they are older, we offer camouflage make-up or skin grafting to transplant the pigment cells from normal areas to affected areas,” he said.

However, medical literature indicates that skin grafting treatment for piebaldism is challenging and results are not always guaranteed.

Dr Koh said the mutation is found in nearly every species of mammal and is more common in animals such as mice, rabbits, dogs, deer, cattle and horses.

In domestic animals, it may be due to selective breeding, with breeders choosing these traits.

The condition is present from birth and the patches are generally stable, unlike vitiligo, a chronic autoimmune disorder that causes patches of skin to lose pigment extensively over time, Dr Koh said.

He added that piebaldism is not albinism, a different genetic condition that generally affects the entire skin surface, hair and eye colour.

People with piebaldism can face bullying and stigmatisation for their unusual appearance, and this in turn could lead to psycho-social and self-esteem issues, Dr Koh said.

Having been born with piebaldism, American fashion model Rebecca Heckard was made fun of in school. Nicknamed “skunk” by her schoolmates, she used layers of thick make-up and clothing to cover up her birthmarks.

Today, she wears her birthmarks proudly.

Stefanie was much luckier as everyone at her primary and secondary schools was very accepting, and no one ever made her feel bad for looking different, she said.

“But I was quite worried when I was first entering junior college. It was going to be a new environment and I was going to be meeting a lot of new people. But in the end, everyone was very nice and no one cared that I looked different,” she told ST.

“Surprisingly, I did not get asked questions about my condition by my friends very often. I think many people avoid asking about my condition because they think it is a sensitive topic for me. Honestly, I do not really mind being asked, as long as they are respectful.” When friends do ask, she gives them “a simple explanation”.

Zain is now attending Masjid Kampung Siglap Kindergarten, at nursery level.

“Before he started there, we informed the school about his piebaldism. His teacher took the initiative to research the condition, asked us questions to better understand it, and even helped explain it to his classmates in a simple, age-appropriate way,” Mr Azharuddin said.

“At this young age, children are wonderfully accepting. They see differences as just another part of who someone is, and Zain has been embraced just as he is.”

As for Stefanie, her life “is not that different from everyone else’s”.

“I got to do most of the stuff other people my age did when I was growing up. The only thing, of course, was that I could not stay out in the sun for too long. The most frustrating thing when growing up was having to wear hats. I hated wearing them and was very annoyed that other kids around me were not forced to wear them. I still hate wearing hats,” she said.

• To create awareness on rare skin conditions, the Rare Skin Conditions Society (Singapore) and the Dystrophic Epidermolysis Bullosa Research Association, Singapore, will be launching a book, The Skin We Wear: A Photo Story Of Skin And Kin, on May 2, 2025.

For the original article on Straits Times, click here.