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Prader-Willi Syndrome information card
🧬 Genetic Condition

Prader-Willi Syndrome

A complex genetic condition involving insatiable hunger, intellectual disability, and behavioural challenges. Food security is a medical necessity.

🧸 Early Years 🏫 School Age 🧑 Teens & Adults ♾️ Lifelong

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📖 Overview

Prader-Willi Syndrome (PWS) is a complex genetic condition caused by the loss of function of genes on chromosome 15 — on the paternal copy, contrasting with Angelman Syndrome which affects the maternal copy. It occurs in approximately 1 in 10,000-30,000 births.

The most defining feature of PWS is hyperphagia — an insatiable hunger caused by hypothalamic dysfunction. The part of the brain that signals fullness does not work correctly. People with PWS are permanently hungry regardless of how much they eat. Without strict food management, life-threatening obesity develops. Food security — controlling access to food — is a medical necessity, not cruelty.

PWS has a biphasic presentation. In infancy, it presents with severe hypotonia (low muscle tone), poor feeding, and failure to thrive. The hyperphagia phase typically begins between ages 2 and 5 and continues lifelong.

Beyond food, PWS involves intellectual disability (usually mild to moderate), behavioural features including temper outbursts, rigidity, repetitive behaviours, and skin picking, growth hormone deficiency, hypogonadism, sleep disturbance, and distinctive physical features including short stature, small hands and feet, and almond-shaped eyes.

People with PWS can live semi-independently with appropriate support. Managing the food environment, providing structured routine, supporting emotional regulation, and addressing the full range of medical needs are central to quality of life.

🔍 Key Characteristics

Insatiable hunger hyperphagia never feels full
Low muscle tone from birth
Learning disabilities
Food-seeking and stealing behaviours
Rigidity and obsessive behaviours
Skin-picking
Meltdowns and emotional dysregulation
Risk of life-threatening obesity without management

🌅 What Day to Day Life Can Look Like

Hunger is constant and overwhelming — it is not greed, it is neurological and cannot be managed by willpower
Food must be controlled and secured — unlocked kitchens, unsupervised food access, and social events with food all require planning
Temper outbursts occur, particularly around food, changes to routine, or unmet expectations
Rigidity and insistence on sameness is significant — routine changes are very difficult
Growth hormone treatment is common — injections are part of daily life
Sleep disturbance — excessive daytime sleepiness and abnormal sleep architecture affect functioning
Skin picking is common and can cause significant wounds
Emotional regulation is genuinely hard — frustration escalates quickly
Social judgment can be impaired — the person may not read social situations accurately
The person needs ongoing medical monitoring lifelong — endocrinology, dietetics, sleep, and orthopaedics

❌ What People Often Get Wrong

Food restriction in PWS is medical not cruel — obesity in PWS is life-threatening
The hunger in PWS is neurological — willpower cannot overcome it and expecting it to is unfair
Temper outbursts are not bad character — they are part of the neurological profile
PWS is not caused by anything parents did
People with PWS can be loving, funny, and socially engaged — the diagnosis is not their whole identity
Food sneaking and stealing is a PWS behaviour driven by hunger, not dishonesty or bad values
PWS behaviours require PWS-specific management approaches, not standard behaviour management
Growth hormone treatment significantly improves outcomes — it is not optional cosmetic treatment
People with PWS need lifelong support — this does not reduce with age
Every person with PWS has an individual personality and profile within the common features

✅ What Helps

Complete food security locked kitchens essential
Structured meal and snack schedules
Portion control and nutrition management
Growth hormone therapy
Exercise and physical activity
Behavioural support for rigidity meltdowns
Routine and predictability
Specialist PWS clinics
Family education and support
Understanding this is medical not behavioural
Informational only. Consult professionals for individualised support.

🏫 School & Education Support

Food environment must be secured — lunch box access, classroom treats, canteen management all need a plan
Consistent, predictable routine with advance warning of changes
Clear, calm response to temper outbursts — do not escalate
Extra time and processing support for academic work
Occupational therapy for fine motor and daily living skills
Social skills support — particularly around food-related social situations
Liaison with medical team — growth hormone, sleep, and endocrinology are all relevant to school functioning
EHCP with PWS-specific strategies and food management plan
Staff training — all staff must understand PWS food management and not undermine it
Transition planning from early on — adult services for PWS are limited and need to be planned for

⚠️ Safety & Red Flags

Uncontrolled food access — obesity risk is serious and rapidly progressive
Extreme skin picking causing infection or significant wounds
Psychosis — uncommon but occurs in some people with PWS, particularly uniparental disomy subtype
Scoliosis — common and needs orthopaedic monitoring
Sleep apnoea — risk with both obesity and the condition itself
Temper escalating to physical aggression or self-harm
Significant academic or functional regression
Exploitation — people with PWS can be manipulated around food
Transition to adult services going unsupported — a high-risk period
Any situation where food management is being undermined by well-meaning but uninformed people

🔗 Related Conditions

Intellectual Disability (ID)

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