SINGAPORE – In a world fueled by teenage appetites, 17-year-old Teo Zi Yee and 13-year-old David Lucas Soo experience a hunger that never seems to fade.

Living with Prader-Willi syndrome (PWS), a rare genetic disorder, these teens face a seemingly insatiable need for food, often leading to severe complications.

Understanding Prader-Willi Syndrome

Prader-Willi syndrome occurs when a segment of genetic material inherited from the father is missing or nonfunctional, disrupting the brain's capacity to signal that it's time to stop eating.

This condition manifests as constant feelings of hunger, leading to overeating and rapid weight gain.

As highlighted by Associate Professor Angeline Lai, a senior consultant at KK Women’s and Children’s Hospital, the consequences of this can be dire, including morbid obesity that brings a host of health risks such as obstructive sleep apnoea, diabetes, hypertension, and high cholesterol.

The Fight Against Complications

To stave off the dire outcomes of unregulated eating, some families must go to extraordinary lengths, including locking away food supplies.

"The severity of obesity largely depends on how strictly parents manage their child’s diet," says Prof Lai.

Early diagnosis and intervention are crucial, as establishing healthy eating habits from the beginning can profoundly impact a child's development.

Spectrum of PWS Effects

PWS is a spectrum disorder, meaning its effects can vary significantly from person to person.

While some children may thrive in mainstream educational environments, others require special education.

Some, like Zi Yee, face additional physical and cognitive challenges, making their journey even more complicated.

Prevalence and Diagnosis

According to statistics from the Global PWS Registry, the syndrome occurs in approximately 1 in 10,000 to 1 in 30,000 live births across all races and genders.

Each year, KK Women’s and Children’s Hospital diagnoses one to two new cases, with its DNA Diagnostic and Research Laboratory being the only facility in Singapore conducting genetic tests for PWS.

Treatment Strategies

Treatment for children diagnosed with PWS often includes growth hormone therapy, which can enhance muscle mass, improve mobility, and reduce fat accumulation when combined with careful dietary control.

However, the road isn't easy for families.

Personal Stories of Struggle

The Teo family's experience began the moment Zi Yee was born, exhibiting signs that something was amiss.

Initially, the young girl’s lack of movement sparked concern, leading her anxious parents to seek genetic testing.

They were shocked to learn of her diagnosis. "We had moments of ‘why us?’ but quickly came to grips with it," said her mother, Lynn Er.

Zi Yee's journey has been fraught with difficulties, from her inability to feed independently to navigating necessary surgeries and constant health check-ups.

"It’s a challenging world for a child with PWS. We need to be vigilant about her meals; otherwise, the hunger can be overwhelming," her father, Teo Wee Kiat, explained.

On the other hand, David's story also echoes a common narrative.

Initially diagnosed at just nine months old, his family's struggles intensified as he transitioned into adolescence.

His grandmother, Linda Schaumann, mentioned that controlling his appetite has become increasingly difficult, especially during outings.

Meanwhile, she makes sure David has access to healthy meals and engages him in activities to keep him active.

The Long-Term Impact of PWS

The emotional and psychological toll of PWS doesn't end with childhood.

Prof Lai warns that adults with PWS face severe risks associated with obesity, including heart disease and the dangers of binge eating.

The road to stability can be challenging, and both families are proactive in ensuring their children's future, even establishing trust funds for when they become adults.

Advocacy for Better Support

Given the substantial challenges, the Schaumann family and the Teo family suggest creating more accessible living arrangements, such as group homes specifically for adults with PWS in Singapore, where they can receive the supervision they require.

They also advocate for better support mechanisms, including insurance coverage for lifelong medications, to help these individuals lead fulfilling lives.

Towards an Inclusive Society

As society continues to strive for inclusivity, there are calls for improved facilities for individuals with special needs, such as accessible changing areas.

"The lack of these basic amenities often keeps disabled people from participating in society," Ms Er noted, underscoring the need for a more inclusive environment.

The Role of Awareness and Understanding

For families facing the daily struggles of managing PWS, awareness and understanding go a long way in fostering empathy and support.

Every little effort counts towards building a future where these teens can thrive, despite their unquenchable hunger.