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Once, when she was in primary school, a classmate shoved her to the ground, snatched her hat and called her “botak” (Malay for bald).
She was left crying on the floor.
Colene Faith was born with red flaky skin and very sparse hair, which made her seem bald. From a young age, and even now, she would always leave the house wearing a hat or a scarf.
After close to three decades of not knowing her exact illness, the 29-year-old was recently officially diagnosed with Netherton’s syndrome.
Netherton’s syndrome is a genetic skin condition that causes brittle hair and flaky, red skin. When not treated properly, it can result in broken, bleeding skin that can leave the sufferer covered with disfiguring scabs.
Colene is one of several Singaporeans — it affects about 1 in 200,000 babies — who have the condition.
Yet, her chronic skin condition didn’t stop Colene from pursuing her dreams. In fact, it contributed to the career journey she chose. Today, Colene is a professional life coach and motivational speaker based in Malaysia.
Growing up in fear without a diagnosis
“My skin was constantly tearing from head to toe. My skin was bloody, it was always full of pus,” Colene tells The Pride what her skin was like when she was born.
Decades ago, medical technology and research was not as advanced as it is today. So, Colene never received a proper diagnosis on what she had.
“Doctors were only able to identify that it was a rare condition that is undiagnosable,” Colene explains.
Instead, doctors prescribed steroid creams to help Colene soothe her skin.
Colene was frequently hospitalised for her condition. However, without an official diagnosis, it made it hard for her to receive appropriate treatment.
Doctors told her mother how Colene may not be able to live past the age of five.
“I was constantly living in fear, not knowing if I could survive another year,” adds Colene.
It was only until about a month ago when she finally found the answer to her biggest question in life.
In October, Colene was hospitalised for Covid-19. There, medical staff noticed her skin was flaky and inflamed. The SGH dermological team called for a consultation with Associate Professor Mark Koh, Head and Senior Consultant of the Dermatology Department at KKH.
After a physical examination, Assoc Prof Koh confirmed that Colene had Netherton’s syndrome.
“It feels amazing to finally have a diagnosis. I finally have closure,” Colene says.
Feeling unaccepted from everyone
When she was a child, Colene not only had to struggle with her fears about her disease, but she also had to deal with others not understanding her situation.
Today, she is outspoken and confident, but when growing up, she was the furthest from it.
When she was in primary school in Malaysia, she remembers being called names like “ugly”, “dinosaur”, and “smelly”.
This took a toll on the young girl’s self-esteem, and she found comfort in wearing hats to hide most of her face.
She did this even at school, which was against uniform regulations.
That led to her classmates bullying her and stealing her hats — her “shield”, as she describes it. But worse, some teachers were just as uninformed.
Once, not knowing what her hat meant to Colene, a teacher yelled at her for not obeying school uniform rules. Even after listening to Colene’s explanation, the teacher snatched her hat and threw it across the room into the bin.
Colene would also frequently skip physical education lessons because she felt self-conscious and did not want to risk having her hat fall off to reveal her hair and face.
“I am still emotionally scarred by these experiences, but they helped me become stronger,” Colene adds.
Being the only child raised by a single mother made growing up lonely too.
“My mother raised me up as a single parent and worked really hard to help make ends meet,” Colene explains.
Because her mum was constantly working hard to provide for her, it also contributed to Colene’s loneliness. Feeling like there was no one who understood her situation, she turned inwards and became reclusive.
It wasn’t until she was 17 when she had a revelation.
It felt as if a switch was turned on in her.
“I realised it all comes from within. When you do not value yourself, people will find it hard to value you too. I started shifting my perspectives and realised that I am a unique individual,” Colene says.
From then on, she no longer cared about what others thought of her appearance, and ditched her hats for head scarves instead.
“I think it is important to not be someone you’re not, and to be who you really are,” says Colene.
Being an avid fan of (US talkshow host) Oprah Winfrey, Colene wanted to be a great communicator. She signed up for interpersonal and speaking skills development courses, and worked on her communication skills.
She got her degree and an MBA in Corporate Management in Marketing in Malaysia.
However, all this while, she always wanted to be able to help people improve their lives.
When she graduated during the pandemic struck, she decided to turn this dream into a reality.
“Seeing people suffer from all over the world, I decided to use my experience to help motivate and inspire others,” Colene says.
During the pandemic, she started working as a life coach. Over the past three years, Colene has spoken to over 3,000 people through online talks and life coaching sessions.
Finding support in small community
But even as her professional career took off, it was the personal connections that Colene needed.
Now that she has grown up, Colene is closer than ever with her mother now, allowing her to have a good emotional support system. However, since her recent Netherton’s diagnosis, she lacks the experience and knowledge of how to properly manage her skin.
Her doctor, Assoc Prof Koh, understood that patients and families with rare skin conditions would feel lost and lonely, decided to connect his patients with one another.
In 2017, he set up a support group called Rare Skin Conditions Society (RSCS), with other parents and doctors. This support group aims to help create a support system for caregivers and patients with rare skin conditions.
One family Colene has connected with is Sophie Ng and her parents, George and Elaine. Sophie is a 3-year-old with Netherton’s syndrome. She is the only toddler born in Singapore with the skin condition.
“It’s such a comfort to know that I am not alone in this world anymore, knowing there is a girl here that is just like me,” Colene explains the bittersweet feeling she got when she found out about Sophie.
Meeting Sophie and her parents also taught Colene some tips and tricks to dealing with Netherton’s syndrome, such as what products to use. They have met several times to learn about one another’s experiences.
“Sophie does remind me of how I was like when I was younger, I definitely do feel like a big sister to her,” laughs Colene.
Apart from providing emotional support for caregivers and patients, RSCS also works towards providing financial assistance to families with rare skin conditions.
RSCS, together with Dystrophic Epidermolysis Bullosa Research Association Singapore (DEBRA) is raising funds through Run for Rare.
Started in October, it is a hybrid campaign consisting of a virtual run and a physical event on Saturday (Dec 3). At the event at Sandbank in East Coast Park, you can have lunch and chat with caregivers and patients. A $50 donation will also get you a goodie bag worth $200 at the event.
For more information, visit the Run for Rare website.
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“Don’t be afraid to be kind. Being kind brings us together and can help others see light at the end of the tunnel,” says Colene.
“No matter the situation you are in, you are not alone, there are definitely people out there who will understand you.”