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LIVING WITH PRADER-WILLI SYNDROME

LIVING WITH PRADER-WILLI SYNDROME. WHAT IS PRADER-WILLI SYNDROME?. PWS is a complex genetic disorder that typically causes low muscle tone, short stature, cognitive disability, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-

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LIVING WITH PRADER-WILLI SYNDROME

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  1. LIVING WITH PRADER-WILLI SYNDROME

  2. WHAT IS PRADER-WILLI SYNDROME? • PWS is a complex genetic disorder that typically causes low muscle tone, short stature, cognitive disability, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life- threatening obesity.

  3. HOW COMMON IS PWS? • It is estimated that one in 15,000 people has PWS.

  4. WHAT CAUSES THE APPETITE AND OBESITY PROBLEMS IN PWS? • People with PWS have a flaw in the hypothalamus part of their brain, which normally registers feelings of hunger and satiety. While the problem is not yet fully understood, it is apparent that people with this flaw never feel full; they have a continuous urge to eat that they cannot learn to control.

  5. To compound this problem, people with PWS need less food than their peers without the Syndrome because their bodies have less muscle and tend to burn fewer calories.

  6. WHAT KINDS OF BEHAVIOR PROBLEMS DO PEOPLE WITH PWS HAVE? In addition to their involuntary focus on food, people with PWS tend to have obsessive/compulsive behaviors that are not related to food, such as repetitive thoughts and verbalizations, collecting and hoarding possessions, picking at skin irritations, and a strong need for routine and predictability.

  7. Frustration or changes in plans can easily set off a loss of emotional control in someone with PWS, ranging from tears to temper tantrums to physical aggression.

  8. QUALITY OF LIFE General health is usually good in individuals with PWS. If weight is controlled, life expectancy may be normal, and the individual’s health and functioning can be maximized. Adolescents and adults with PWS can function well in group and supported living programs, if the necessary diet control and structured environment are provided.

  9. WHAT CAN YOU DO TO HELP? • Please help spread awareness of Prader-Willi Syndrome and help save lives. • Help create a compassionate environment for those who bravely struggle with this disorder, living in a world where the biggest threat to their lives is food—the very item they need to live. • Help create acceptance of our loved ones with PWS, who struggle in a society that shuns those who are overweight. • Those with PWS just want to live a healthy life with acceptance of who they are, just like anyone else.

  10. THANK YOU! • A SPECIAL THANK YOU, FROM THE BRITISH COLUMBIA PRADER-WILLI SYNDROME ASSOCIATION. THANK YOU FOR TAKING THE TIME TO LEARN ABOUT PRADER-WILLI SYNDROME !

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