In most homes, a child asking for second helpings at dinner is met with encouragement or teasing. But for some families, constant hunger is not just a phase, it is a warning sign of something far more complex.
Beneath the surface of seemingly insatiable appetites lies a rare and often misunderstood condition that affects not only the body but the rhythm of daily life: Prader-Willi Syndrome (PWS).
It is easy to overlook, a child with a hearty appetite is usually considered healthy, even growing. But in cases of PWS, hunger never turns off. Known medically as hyperphagia, this constant urge to eat is a primary symptom of the rare genetic disorder that affects approximately 1 in 15,000 births.
If left unmanaged, the condition can lead to life-threatening complications including obesity, diabetes, high blood pressure and heart disease. In Malaysia, where awareness of rare diseases remains limited, most cases go undiagnosed or misidentified.
According to PWSA Malaysia, only 199 cases have been identified — a number that suggests countless others are living without proper diagnosis or support.
There is no cure for PWS, but early and consistent treatment can improve outcomes. One key intervention is Human Growth Hormone (HGH) therapy, which helps build muscle strength and supports physical growth.
Unfortunately, in Malaysia, this treatment is not subsidised under rare disease coverage, making it financially out of reach for many. Only 15 per cent of families registered under PWSA Malaysia can afford the HGH treatment.
For the remaining majority, the uphill battle continues. Not just against symptoms, but against a system that does not yet recognise their needs.
To amplify awareness and raise funds, students from the Diploma in Communication (DICM) programme at Taylor’s College recently organised Voices for Hope, a campaign dedicated to supporting PWSA Malaysia.
Held in conjunction with the programme’s 25th anniversary, the event showcased the power of youth-led advocacy and empathy in real-world issues.
Qreena Tee Qi Jiun, a second-year DICM student and campaign leader, said that the real learning is not just about gaining knowledge from books, it is also about sharing humanity, empathy and understanding to spread awareness to people around us.
“Although the effort might be like a flame, it is always enough to light up the entire path in the dark. A small spark lights up the dark, a small cause lights up the future,” she said.
Through inclusive games like pickleball and sensory simulations, the event allowed participants to better understand the sensory and social experiences of those living with PWS.
It also created space for meaningful conversations between the public and members of the PWS community such as caregivers, advocates and individuals alike.
At the heart of the campaign were the voices of caregivers, parents who live each day navigating the challenges of PWS with resilience and grace.
Azman Ahmad Bakri, father to a child with PWS, spoke candidly about the challenges in securing proper medical care:
“We have tried applying through the normal channels, but not a lot of doctors are well equipped in handling PWS cases and there are also instances where they are not very familiar with what PWS is.
“It is very frustrating for us caregivers because we are not able to get the right care when the condition is not recognised or understood,” he said.
Maheswarie Subramaniam recalled that her son, Nagheendran, now 26, was misdiagnosed until he was four years old, a delay that cost precious time for early intervention. Her story is a stark reminder of the importance of timely diagnosis and systemic awareness.
For Lantz Yap, father to Ken, the diagnosis brought an immediate shift in family dynamics and routine. He now prepares meals tailored specifically to Ken’s dietary needs and often eats separately to avoid triggering hunger or emotional stress.
“Sometimes when people see a hungry child, their instinct is to offer food. But for our children, that can be dangerous. There were times when people criticised us for limiting his food intake. The truth is, we are not restricting him; we are protecting him,” he said.
President of PWSA Malaysia, Azhar Talib, acknowledged that while local awareness remains low, Malaysia is gradually stepping into global discussions around research and advocacy.
“It is encouraging to see promising research happening in areas like gene therapy and hunger control. We may not have a cure yet, but there is real progress and Malaysia is now part of that global conversation,” he mentioned.
PWSA Malaysia has also launched online resources to support families. Their website offers guidance across life stages, from dietary management to education planning and emotional care — acting as a lifeline for parents searching for direction.
Looking ahead, the association’s five-year goal includes advocating for government support and subsidies for daily HGH treatment, bringing hope to families that financial relief and better care may someday become a reality.