Imagine feeling constantly hungry.
People with Prader-Willi Syndrome (PWS) have a genetic disorder that causes a permanent hunger for food. This syndrome is a lifetime condition that afflicts one person in 15,000. The diagnosis of PWS is often overlooked by medical professionals.

Click here for a Roadmap to Aid You Along the PWS Journey (0-36 months of age).

Characteristics of people with PWS are:

  • weight gain on as little as 800 calories a day
  • intellectual impairment
  • short stature
  • obsessive behaviors - like skin picking
  • excessive daytime sleepiness
  • extreme stubbornness
  • incomplete sexual development
  • babies with PWS are weak, sleepy and don't cry or eat well.

Despite these problems, people with PWS can learn and accomplish many things. They are very loving and sociable, show great interest in games, puzzles, reading and artistic endeavors. With the help of understanding caregivers, people with PWS can enjoy happy fulfilled lives.

One of the most important breakthroughs in PWS research is DNA testing. Diagnosis is now possible soon after birth, giving families control of weight management before obesity sets in. Early diagnosis helps parents get appropriate medical and educational interventions for their child.

One of the major problems facing this group, is the inability to live independently in adulthood.

People with PWS are incapable of managing their food intake. Without stringent controls far more serious, even fatal conditions, can occur.

Specialized housing facilities with isolated food services are required.

Caseworkers and other staff need special skills, understanding, and a general acceptance of the humanity of the person with PWS.

  • To increase awareness and knowledge about PWS
  • To provide lifetime advocacy for affected individuals
  • To provide better quality of life for children and their families
  • To raise money to construct Specialized Housing

Through the teamwork of families and caregivers, The Prader-Willi Syndrome Association of Alberta will work towards improving and enhancing the lives of those with Prader-Willi Syndrome.

PWS is commonly underdiagnosed because of individual variations in symptoms.

PWS is a genetic disorder that causes a permanent hunger for food. It is a lifetime condition that afflicts one person in 15,000.

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