Prader-Willi Syndrome
A genetic condition affecting appetite regulation and emotional regulation.
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Overview
Prader-Willi Syndrome is complex genetic condition affecting hypothalamus causing insatiable hunger hyperphagia low muscle tone learning disabilities behavioural challenges. Affects 1 in 15000 births. Hunger drive so overwhelming it dominates life. People with PWS can never feel full. Babies have severe low tone feeding difficulties. Then around age 2-8 insatiable hunger begins. Without strict food security life-threatening obesity develops. Condition is not about lack of willpower. Brain literally cannot register fullness. Food-seeking behaviours include stealing food eating non-food items extreme distress around food access. Behavioural challenges include rigidity obsessive behaviours skin-picking meltdowns. Many have autism-like features or ODD. Learning disabilities common but vary in severity. Growth hormone treatment helps with muscle tone height body composition. Management requires complete food security locked kitchens supervised meals portion control. Not punishment but medical necessity. With appropriate support structured routines understanding people with PWS lead meaningful lives. Life expectancy improving with better management.
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 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
Note: Informational only. Consult professionals for individualised support.