May is Prader Willi Syndrome Awareness Month

Prader-Willi syndrome (PWS) is a rare genetic disorder affecting approximately 1 in 15,000 people—males and females equally, from all races and ethnicities. PWS is a life-threatening medical disorder caused by loss of active genetic material on chromosome 15. This affects:

  • Hormones
  • Muscle strength
  • Appetite
  • Behavior
  • Cognition and learning
  • Temperature regulation
  • Pain tolerance
  • Sleep patterns

Nearly every system in the body is impacted by a PWS diagnosis, but the hallmark symptom is hyperphagia, or continuous, extreme hunger. A person with PWS never feels full. Exacerbating this problem, those with PWS have a slow metabolism and need only a fraction of the calories of their typical peers. The result is easy weight gain. PWS is recognized as the leading genetic cause of life-threatening obesity in children.

To reduce the risk of obesity, it’s important for children with PWS to be taught the importance of adopting a healthy lifestyle early in life. The prevention and management of obesity is dependent on a combination of:

  • a sensible diet (energy intake)
  • the modification of eating behaviors (to ensure children adhere to prescribed diet)
  • an exercise plan (energy expenditure)

Playgrounds can play a key role in a home-based exercise program.

  • Swings help with sense of balance.
  • Climbing assists with concentration, coordination, balance, and problem-solving skills.
  • Slides and water slides as they are not only fun, but require a lot of stair climbing to reach the top.
  • Monkey bars to help build upper body strength.
  • Youth fitness equipment can be used to develop exercise routines

Learn more about Prader Willi Syndrome and how you can get involved at the Foundation for Prader Willi Research


Exercise and Physical Activity for Children with Prader Willi Syndrome by Kristy Reid and Peter SW Davies Children’s Nutrition Research Centre The University of Queensland

Foundation for Prader Willi Research