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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

Sources:

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