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2 S’porean men share lifelong struggle & quiet resilience living with rare bleeding disorder

MS Features: Two Singaporean men share their lifelong journey with haemophilia to raise awareness

For most people, a bruise or a cut is nothing more than a fleeting inconvenience.

But for Melvin Tan, 55, and Ng Kheng Chew, 27, it has been a lifelong reminder that their bodies work differently.

Both men live with haemophilia, a rare genetic condition that prevents blood from clotting properly.

And despite being from different generations, their stories echo with the same questions, fears, and ultimately, resilience.

Growing up with pain and uncertainty

Melvin, who is vice president of the Haemophilia Society of Singapore, was diagnosed as a toddler after his mother noticed unusual bruising on his tummy.

Back then, treatment options were limited and exhausting, according to Melvin.

“The hospital was almost my second home,” he shared. Simple bleeds meant long waits, delayed treatment, and prolonged pain. 

For Kheng Chew, born decades later, treatment had improved, but the emotional challenge remained.

 

As a child, he loved running and playing like any other kid, but frequent injuries forced him to slow down.

“You start questioning yourself, why can’t I do this? Why can’t I do that?” he shared.

Why can’t I do the things that other boys my age can do?

An invisible condition

Haemophilia is often described as an “invisible condition”, and it is not difficult to see why.

On the outside, both men appear healthy, but behind the scenes, their lives revolve around injections, careful planning, and the constant risk of internal bleeding.

Melvin recalled being bullied for appearing normal one day, only to come into school on crutches the next day.

“They didn’t know any better. It was difficult for them to understand how someone could look perfectly normal one day and end up on crutches the next,” Melvin recalled.

Kheng Chew also shared a similar experience where he was once asked if his injured arm was “fake” because he could still write with it.

“I mean, at the time, it was upsetting to hear, of course. But looking back, it really wasn’t that big of a deal,” Kheng Chew said.

Both now view these moments as a lack of awareness rather than malice.

A lifelong mental and emotional toll

Beyond the physical pain lies a deeper psychological toll on haemophilia patients.

“When you have your good days, you feel very normal. But on your bad days, you feel terrible and wonder, ‘Why me?’” Melvin said.

Growing up, he also felt guilt over treatment costs for his family.

“When I was younger, I didn’t think much about finances. But as I grew older, I realised that it wasn’t easy for my family, even though both my parents were working,” he told MS News.

For Kheng Chew, one of the toughest challenges was learning to inject himself with the medication.

Repeated failed attempts and the constant pain of needle jabs made him frustrated and demoralised. But ultimately, it built resilience.

“It was demoralising in some ways, but at the same time it strengthens you,” he said. ” I’m thankful that I came out on top of it.”

A constant risk when travelling

Travel is particularly challenging. Melvin shared with MS News how overseas trips are anything but straightforward.

Each time, he has to calculate how much medication to bring and ensure that it stays properly refrigerated throughout the journey.

Unlike most travellers, he carries a separate bag just for his medication, packed with ice packs to maintain its temperature.

The moment he reaches his destination, finding a working fridge becomes his top priority.

“If I can’t find a fridge, I panic,” he admitted.

Source: danielvfung on Canva for illustration purposes only

Melvin recalled a fall that he had suffered while in Hong Kong for a vacation. That may seem minor for most people, but it carries heavier consequences for someone with haemophilia.

A simple fall can trigger internal bleeding, especially in joints, leading to swelling and intense pain if not treated quickly.

“I had to rush to the local hospital’s A&E department to make sure I was okay,” Melvin recounted.

“It was quite a traumatic experience for me, and I think it was also very traumatic for my wife. It was quite an experience, but thankfully it all turned out okay,” he added.

Looking into the future

Haemophilia also shapes future decisions. Kheng Chew worries about passing on the genetic condition, which makes starting a family a more complex decision.

“I keep thinking, should I have kids or should I not have kids? I don’t want to impose this on my child, but at the same time, I do want to have children,” Kheng Chew told MS News.

“But for partners, it’s always like, are you okay with this?” he added. “It’s something I want to be upfront about.”

The weight of the possibility is clear. It’s not just about managing his own condition, but also considering what it could mean for the next generation.

Treatment has since evolved significantly, and both gentlemen have been made witnesses to this advancement.

Melvin grew up relying on cryoprecipitate, a blood-derived treatment that required hospital visits and long waiting times.

This later progressed to factor replacement, which allowed patients to self-administer medication at home, a breakthrough that significantly improved quality of life.

Over time, treatments have become safer and more refined, including recombinant therapies and extended half-life options that reduce how often injections are needed.

Looking ahead, both men are hopeful about gene therapy, which could potentially offer longer-term or even lasting solutions.

Life shaped but not defined by haemophilia

Despite a lifetime of challenges, both men have carved out full, independent lives, proving that their condition does not define them.

Kheng Chew channels his energy into music, art, and quieter pursuits that bring him joy, while Melvin has found purpose through advocacy and community work, turning his experiences into a platform for awareness.

Both credit their families and support systems for helping them through their toughest moments. Melvin summed it up perfectly:

You find your tribe.

Though haemophilia remains a constant factor in their lives, with ongoing risks and daily management, both men hope their stories will foster understanding.

They believe that awareness can breed empathy, and with empathy, fewer children growing up with the condition will feel isolated, misunderstood, or different.

As Melvin puts it: “With the right support and preparation, this condition doesn’t have to limit us.”

Also read: How a stroke at 43 led this keto-friendly ice cream founder to open a bigger store at Bras Basah

Have news you must share? Get in touch with us via email at news@mustsharenews.com.

Featured image courtesy of Cassia Leong and Felicia Fun for MS News.

Gary Yang

Gary is a football fanatic with a knack for finding beauty in the most unexpected places — whether it’s a perfectly-timed goal or the perfect cup of coffee on a lazy Saturday.

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