Understanding Prader-Willi syndrome
Prader-Willi Syndrome: Hunger That Never Ends.
Meet Adam – A Journey of Strength and Awareness
Adam’s journey began with a struggle. When he was born, he couldn’t suck, couldn’t cry, and had to be fed through a tube. His tiny body was weak, and every small movement took all the strength he had. While other newborns grew stronger and more active, Adam had to fight for every ounce of progress.
The first six years of his life were filled with doctor’s visits, tests, surgeries, and therapies. Hospitals became a second home, and doctors, nurses, and therapists became part of his family. Every milestone—holding up his head, rolling over, sitting, standing, and walking—came later than other kids his age. But Adam never let that stop him. He worked harder, practiced longer, and refused to give up.
As he grew older, new challenges appeared. His body didn’t recognize when he was full, making every meal a test of willpower. Simple tasks like running, climbing, and playing took extra effort. Learning in school required more patience and persistence. But Adam had something that set him apart—his heart was full of courage, and his spirit refused to break.
With each passing year, Adam pushed himself further. He learned to walk, then to run, then to ride a bike. He faced every challenge with determination, knowing that his journey might be different, but his destination was the same as any other child’s—to grow, to dream, and to achieve.
Adam dreams big. He wants to be a teacher because he loves helping others learn. He also dreams of becoming a rubbish truck driver because he loves the big, powerful trucks that keep the streets clean. To Adam, no dream is too big, no goal is impossible.
Despite everything he faces, Adam wakes up every day with hope. He works harder than most kids, but he smiles brighter too, because he knows every step he takes is a victory. He is proof that challenges do not define a person—determination does.
Adam is not just a boy with Prader-Willi syndrome. He is a fighter, a dreamer, and an inspiration. He may take longer, work harder, and struggle more—but he will always get there. And when he does, he will shine.
Because Adam is unstoppable.
Adam
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PWS Awareness
Explore Prader-Willi Syndrome and learn how to support Adam.
What is Prader-Willi Syndrome?
Prader-Willi syndrome (PWS) is a rare genetic disorder that affects approximately 1 in 15,000 to 1 in 20,000 people worldwide. It is caused by missing or malfunctioning genes on chromosome 15, which impact growth, metabolism, behavior, and appetite control.
Prader-Willi Syndrome is a Complex Condition That Causes:
Constant hunger (hyperphagia) – never feeling full, leading to food-seeking behaviour.
Slow metabolism – burning fewer calories, increasing the risk of obesity.
Low muscle tone (hypotonia) – weak muscles, especially in infancy, causing delayed motor development.
Intellectual disability – ranging from mild to moderate, affecting learning and problem-solving.
Behavioral challenges – including stubbornness, temper outbursts, anxiety, and obsessive-compulsive tendencies.
Hormonal imbalances – leading to short stature, delayed puberty, and reduced growth hormone production.
Sleep disturbances – difficulty falling or staying asleep, excessive daytime sleepiness.
Delayed milestones – sitting, walking, and speaking often occur later than typical development.
Poor temperature regulation – difficulty sensing hot or cold, increasing the risk of overheating or hypothermia.
Weak social skills – challenges in understanding social cues and forming relationships.
The Biggest Challenge: Constant Hunger & Slow Metabolism
One of the most difficult symptoms of PWS is hyperphagia, an insatiable hunger that never goes away. People with PWS never feel full, no matter how much they eat. This happens because their hypothalamus, the part of the brain that regulates hunger, does not function properly.
At the same time, their bodies burn fewer calories due to low muscle tone and a slow metabolism. This means even normal portions of food can lead to severe obesity, increasing the risk of diabetes, heart disease, and other serious health complications.
Food-Seeking Behaviour: A Daily Challenge
Because they always feel hungry, individuals with PWS may:
Constantly ask for food or talk about eating.
Sneak or steal food when unsupervised.
Eat unsafe items due to extreme hunger.
Experience emotional outbursts when denied food.
This creates challenges at home, school, and in society, requiring strict food management and strong support systems.
What Support Do They Need?
✅ At Home:
Locked pantries and refrigerators to prevent overeating.
Strict meal plans & portion control to maintain a healthy weight.
No food-based rewards—reinforce achievements in other ways.
Regular physical activity to boost metabolism and prevent obesity.
✅ At School:
Supervised meals to prevent food-seeking behavior.
No access to vending machines or unattended food.
Trained teachers & staff to understand emotional and behavioral struggles.
Individualized learning support for developmental delays.
✅ In Society:
Community awareness to prevent stigma and misunderstanding.
Inclusive social activities that do not revolve around food.
Employment opportunities in structured environments where food isn’t easily accessible.
Is There a Cure?
Currently, there is no cure for PWS, but early intervention and proper management can help individuals lead fulfilling lives. Growth hormone therapy, behavioral therapy, structured routines, and strict food management are key to improving their quality of life.
Despite these challenges, people with PWS are strong, determined, and full of dreams. With the right support, they can achieve their goals—whether it’s becoming a teacher, a rubbish truck driver, or anything they set their heart on.
