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What is Prader-Willi Syndrome (PWS)?

What is Prader-Willi Syndrome and what are some symptoms of PWS?

Prader-Willi Syndrome, abbreviated as PWS, is a rare condition that is going to be permanent and begins at the birth of child. These are children and adolescents who don’t have the ability to feel satiated at any time After eating, these children become very obese, sometimes weighing two to 300 pounds and only being five feet tall. And we’re the only inpatient program for these kids in the United States.

With PWS, it’s coded in their genetics. It’s not a chosen behavior.

Prader-Willi Syndrome and behavioral challenges

Kids with PWS typically have two main behavioral issues, food seeking behaviors, which means they’re constantly looking for food. A lot of kids with Potter Willie Syndrome also have intellectual disability, so that can contribute to their understanding of why food is being restricted, which also leads to acting out.

How the Jump Start Program helps children and adolescents with PWS

We have a very structured program that provides them with what we call food safety or food security, and our outcomes speak for themselves. We have celebrations for our kids who lose a hundred pounds, and some of our kids have even lost 200 pounds because their survival depends on it. It’s got to be a balance between helping a child recognize that they can’t continue to eat the way they had, but to have enjoyment and also know that the people surrounding them love and care for them.

Nexus offers the only inpatient program in the country for children with Prader-Willi Syndrome. Learn more about the Jump Start Program.

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