PWS Awareness: Day 3

Myth: All people with PWS seek food in the same way and are affected by the syndrome equally.

Truth: There is great variation in the level and intensity of food seeking among people with PWS. However, 24/7 supervision around food is needed for all those with PWS. Like Autism, PWS is a spectrum syndrome. While those with PWS share many of the same characteristics, it affects each person differently.

Q: What kinds of behavior problems do people with PWS have?

A: 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 of possessions, picking at skin irritations, and a strong need for routine and predictability. 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. While psychotropic medications can help some individuals, the essential strategies for minimizing difficult behaviors in PWS are careful structuring of the person’s environment and consistent use of positive behavior management and supports.

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