LIVING WITH LIVING WITH PRADER-WILLI PRADER-WILLI

SYNDROMESYNDROME

WHAT ISWHAT IS PRADER-WILLI PRADER-WILLI

SYNDROME?SYNDROME? PWS is a complex genetic disorder that PWS is a complex genetic disorder that

typically causes low muscle tone, short typically causes low muscle tone, short stature, cognitive disability, problem stature, cognitive disability, problem behaviors, and a chronic feeling of behaviors, and a chronic feeling of hunger hunger

that can lead to that can lead to

excessive eatingexcessive eating

and life-and life-

threatening obesity.threatening obesity.

HOW COMMON IS HOW COMMON IS PWS?PWS? It is estimated that one in 15,000 It is estimated that one in 15,000

people has PWS. people has PWS.

WHAT CAUSES THE APPETITE WHAT CAUSES THE APPETITE AND OBESITY PROBLEMS IN AND OBESITY PROBLEMS IN

PWS?PWS?

People with PWS have a flaw in the People with PWS have a flaw in the hypothalamus part of their brain, hypothalamus part of their brain, which normally registers feelingswhich normally registers feelings of hunger and satiety. While the of hunger and satiety. While the problem is not yet fully understood,problem is not yet fully understood,it is apparent that people with this it is apparent that people with this flaw never feel full; they have a flaw never feel full; they have a continuous urge to eat that they continuous urge to eat that they cannot learn to control. cannot learn to control.

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

burn fewer calories.burn fewer calories.

WHAT KINDS OF BEHAVIOR WHAT KINDS OF BEHAVIOR PROBLEMS DO PEOPLE PROBLEMS DO PEOPLE

WITH PWS HAVE?WITH PWS HAVE?

In addition to their involuntary focus on In addition to their involuntary focus on food, people with PWS tend to have food, people with PWS tend to have obsessive/compulsive behaviors obsessive/compulsive behaviors

that are not related to food, such that are not related to food, such

as repetitive thoughts and as repetitive thoughts and

verbalizations, collecting and verbalizations, collecting and

hoarding possessions, picking hoarding possessions, picking

at skin irritations, and a strong at skin irritations, and a strong

need for routine and need for routine and

predictability.predictability.

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

QUALITY OF LIFEQUALITY OF LIFE

General health is usually good in General health is usually good in individuals with PWS. If weight is individuals with PWS. If weight is controlled, life expectancy may be controlled, life expectancy may be normal, and the individual’s health and normal, and the individual’s health and functioning can be maximized.functioning can be maximized.

Adolescents and adults Adolescents and adults withwith PWS can PWS can function well in group and supported function well in group and supported living programs, if the necessary diet living programs, if the necessary diet control and structured environment are control and structured environment are provided. provided.

WHAT CAN WHAT CAN YOUYOU DO TO DO TO HELP?HELP?

Please help spread awareness of Prader-Willi Please help spread awareness of Prader-Willi Syndrome and help save lives. Syndrome and help save lives.

Help create a compassionate environment for those Help create a compassionate environment for those who bravely struggle with this disorder, living in a who bravely struggle with this disorder, living in a world where the biggest threat to their lives is foodworld where the biggest threat to their lives is food—the very item they need to live. —the very item they need to live.

Help create acceptance of our loved ones with PWS, Help create acceptance of our loved ones with PWS, who struggle in a society that shuns those who are who struggle in a society that shuns those who are overweight. overweight.

Those with PWS just want to live a healthy life with Those with PWS just want to live a healthy life with acceptance of who they are, just like anyone else.acceptance of who they are, just like anyone else.

THANK YOU!THANK YOU! A SPECIAL THANK YOU, FROM THE BRITISH A SPECIAL THANK YOU, FROM THE BRITISH

COLUMBIA PRADER-WILLI SYNDROME COLUMBIA PRADER-WILLI SYNDROME ASSOCIATION. THANK YOU FOR TAKING THE ASSOCIATION. THANK YOU FOR TAKING THE TIME TO LEARN ABOUT PRADER-WILLI TIME TO LEARN ABOUT PRADER-WILLI SYNDROME !SYNDROME !