PUBLISHED ONMarch 29, 2025 11:15 PMByCandice Cai"Why did my classmate say that my skin is yucky?" asked five-year-old Sophie Goh.
It may seem like an innocent question, but for her mother, Elaine Ng, it was a moment that made her heart drop.
Sophie was born with a rare genetic disorder known as Netherton Syndrome, which affects the skin, hair and immune system.
The condition afflicts only one in approximately 200,000 newborns worldwide and Sophie is the only child living in Singapore who has it.
Like many others with Netherton Syndrome, Sophie lives with skin that is perpetually red and inflamed, and she has short, brittle hair.
As her dehydrated skin itches and has a tendency to bleed when scratched, it has to be moisturised eight times a day.
To Elaine, 41, the recent question sadly marked the preschooler's first taste of social rejection.
Rather than react in sadness or anger, however, Elaine and her husband George used the incident as an opportunity to reinforce the message that others' opinions don't define one's worth.
"I asked her, 'More importantly do you think your skin is yucky?' and she said 'No, my skin is nice.'
"Then I said that's it, that's all that matters," the marketing manager told AsiaOne in an interview.
Curious stares are something Elaine and her family have had to contend with whenever they are out. But occasionally, strangers cross the line.
"We've had our fair share of people staring, being rude, blaming me, saying that I must have eaten something I wasn't supposed to," she shared.
One time at a supermarket, a sales promoter insisted that Elaine was to blame for Sophie's skin condition as it must have been due to something she ate when pregnant.
Although the promoter later apologised when Elaine told her off, "the damage was already done".
In the early days, she would quietly shed tears over such comments. But over time, Elaine decided to change her perspective.
"I realised that I can choose to be gracious. I can take the opportunity to educate. So, how I want to manage people's unkindness depends on me, and it will also be a way for Sophie to emulate.
"Unkindness just begets unkindness, it becomes a vicious cycle, and I don't want that for her or for the community," she said.
At playgrounds or parties, the family had also encountered other children who avoided playing with Sophie. Thankfully, Sophie was "happily oblivious" at the time as she was just a toddler, said Elaine.
It is this gap in people's awareness about those with rare skin conditions that Elaine hopes to bridge.
"The first thing people assume is that you're contagious [and think] 'I don't want to touch you, I don't want to go near you'," she continued.
Instead, Elaine now takes the initiative to volunteer the information about Sophie's condition at social events.
"I'll introduce Sophie and say, 'Don't worry, she's not contagious, she is just born like that, she has very special skin'."
Few would know that Sophie's first year of life had been a traumatic one and Elaine and her husband George, 42, came close to losing her twice.
The mortality rate for those with Netherton Syndrome can be high due to potentially life-threatening complications, according to the National Library of Medicine.
Sophie's fragile health had once landed her in the intensive care unit, along with multiple hospital visits. The uncertainties of her daughter's condition caused Elaine to spiral into the "deep, dark, hole" of depression.
"It took me about a year to accept [Sophie's diagnosis]," said Elaine, who was diagnosed with depression, anxiety and post-traumatic stress disorder (PTSD).
Elaine bravely admitted that she only began to feel "more like herself" just last year.
Despite the challenges faced, Sophie is now a sociable, cheerful and "spunky" preschooler at a mainstream school. Elaine affectionately calls her a little "chilli padi" — a trait she proudly acknowledges Sophie inherited from her.
Once shy, "now she talks my ear off", said Elaine happily.
More importantly, Elaine has observed that Sophie has developed a deep sense of empathy and kindness — attributes her mother hopes will carry her through life's challenges.
"Because she's definitely not going to have it easy. Even for us, who are visibly 'normal', we don't even have it easy, let alone children like her who look very different," Elaine reflected.
The stigma surrounding rare skin conditions is something Elaine, along with Sophie’s doctors—paediatric dermatologists Dr. Mark Koh and Dr. Lynette Wee—hope to change.
Dr Koh is the co-founder of the Rare Skin Conditions Society Singapore (RSCS), which was established in 2017 to create a support group for patients and families with genetic and incurable rare skin conditions. Elaine is currently its president.
Dr Koh had also set up another support group, Dystrophic Epidermolysis Bullosa Research Association (Debra) Singapore, a support group for another rare condition known as epidermolysis bullosa (EB), where children are born with very delicate skin and body linings.
Both RSCS and Debra help patients financially with their medical care, as treatments and consultation fees for outpatient visits are not subsidised, neither can they be covered by MediSave, said Dr Koh, head and senior consultant of dermatology service at KK Women’s & Children’s Hospital (KKH).
"There's also very little awareness for rare skin conditions in the community," he told AsiaOne.
Dr Wee, a senior consultant at KKH who helps to run both societies, shared how skin diseases are often dismissed as "just skin", but the issues surfaced are often more than just skin-deep.
She added: "Skin is very frivolous in a lot of people's minds so they don't get a lot of support in terms of funding, especially if the condition is not life-threatening. But the skin is such a big organ, and while people may say they don't die, but actually their souls are dead."
"If you have cancer, you can wear a wig. If you have heart disease, you can hide it, but not a skin problem that you can never recover from. It's not life-saving, but it's really spirit-saving," said Dr Wee on efforts to support them.
To this, RSCS and Debra Singapore will be launching a photobook, titled 'The Skin We Wear', which chronicles the lives and experiences of individuals living with rare skin conditions. In conjunction, the society is also organising gala dinner on May 2 to raise funds for these patients.
At just two-and-a-half years old, Adele Tang has little awareness of her skin condition and is still unable to verbalise her discomfort.
Adele was born with EB. EB, whose young patients are known as "butterfly children" due to the skin's fragility, is a rare and painful genetic skin disorder that makes the skin prone to blistering and tearing from minor friction or injury.
Those with severe forms of EB can die in infancy or early childhood.
"Upon her birth, we immediately noticed missing layers of skin on parts of both her feet and toes, something our gynaecologist hadn't seen before," said her mother, Sui Kae Ling, 37.
"It was pretty bad and we panicked," said her husband Amos Tang, also 37.
Blistering also began forming on Adele's bottom where her diaper would come into contact with her skin. Over time, her toes also started to fuse together following the continual process of blistering and healing.
Three days after Adele was born, Dr Koh confirmed the EB diagnosis, as well as the surprising revelation that Kae Ling also had the condition, albeit in a less severe form.
Kae Ling and Amos have an older child who does not have the condition.
As a newborn, heading to hospital every "two to three days" to change Adele's dressing — the same type used for burn victims — became routine.
Holding her was also an exercise in extreme care, and grabbing her under her arms as one typically would carry a baby was a 'no-no'.
"When skin is wet and there's friction, it may even tear off her skin," said Amos.
Till today, Amos reckons that Adele is "always in pain to some degree".
As Adele is still not able to speak, "whenever she cries, we're also unsure of whether it's the pain [from her wounds] or due to other factors," said Kae Ling.
Eating at times and even going to the toilet is also a struggle for Adele, who suffers from constipation as a result.
"When she falls, it's like the end of the world for us," described Amos of the chronic wounds on her body that would result. Bathing, as one can imagine, is another painful ordeal for both parent and child.
They have to contend that there are activities that Adele will never get to experience.
"She'll never be able to go to the playground or go on a slide," said Amos matter-of-factly.
For Amos, who works in the F&B industry and Kae Ling, a civil servant, there is little opportunity to wallow in helplessness at the situation as they busy themselves with caring for Adele's daily needs. They would also rather focus on moving forward.
But besides the physical challenges that their daughter faces, both of them do worry about the social aspects of how Kae Ling will be perceived as she grows up.
Occasionally, well-meaning strangers would come up to them to ask if Adele has eczema and give advice on foods she should avoid and treatments she should try, said Amos.
They have also encountered insensitive comments from some individuals.
"One person had remarked, 'If you hadn't told me I would've thought you were abusing her'," shared Kae Ling.
Others would wonder if her condition is contagious, or would push blame on them as parents, they shared.
But they've learned to brush off the negativity.
"It doesn't really matter, our focus is on her," said Amos. They've also decided against going for further testing to determine what sub-set of EB Adele has as they "don't see the point".
"Knowing what she has will not make things better," said Amos.
They remain cognisant that Adele will have to learn to cope with the inevitable stares and comments on her own in the future.
Said Kae Ling: "The most important thing we can do is to shower Adele with love and guide her towards acceptance and resilience. Our goal is to help her to develop the strength to face whatever challenges may come, and to love herself unconditionally regardless of her condition, letting her know we are here for her."
While the parents of both Sophie and Adele are still able to manage financially so far, they are aware that not everyone is as fortunate, and that's where the fund-raising efforts for RSCS and Debra Singapore is important.
Elaine estimates that currently about $1,000 to $1,500 a month goes to Sophie's treatments, and that's discounting the large amount spent early on in their journey just to find the best combination of topical creams for her.
For Elaine and her husband George, a business development manager, they strive to give Sophie as normal of a childhood as they can, which is why they enrolled her in a mainstream preschool.
"We don't want it to seem like just because your skin's different therefore you have to live a different path or life. That shouldn't limit your opportunities."
While she still feels uncertain of what the future may hold for Sophie, Elaine cherishes the "bittersweet" feeling this brings.
"It's bittersweet in the sense that it forces you to cherish everything," said Elaine, her voice breaking.
"So even if some days [Sophie] makes me angry, I'm also glad that she makes me angry, and I want her to make me angry."
For Kae Ling, the prospect of Adele starting school brings about another set of worries, such as bullying.
It then inevitably leads her to ponder over "deeper and more painful questions", such as whether Adele will "resent us for bringing her into a world where she must endure such suffering", she shared.
Both sets of parents, however, aim to foster a more inclusive society where one is judged not by their appearance but are valued for who they are, which is why they agreed to participate in the photobook to promote RSCS' charity event.
Elaine recognises that "there's still a lot of stigma for those who don't fall into the typical mould", be it in society or at the workplace, and inclusivity is one thing she hopes for in the horizon for Sophie.
Shared Kae Ling: "Adele may not be able to have a normal childhood, but we are determined to ensure she has a fulfilling future.
"Through this project and our ongoing efforts, we hope to create a world where Adele and others like her can thrive, unburdened by societal prejudices."
To find out more about RSCS or The Skin We Wear charity gala and photobook, check out https://www.rareskinconditions.org/tsww-2025.
For more original AsiaOne articles, visit here.
