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WI Parents Struggle With Prader-Willi Syndrome

May 26, 2009

Madison, WI - The refrigerator and kitchen cabinets become "household enemies" when parents learn they have a child with Prader-Willi Syndrome. The rare genetic disorder leads to a lifelong battle with food that manifests itself as an intense drive to eat and little ability to control that drive. May is Prader-Willi Syndrome Awareness Month.

Mary Lynn Larson, with the Prader-Willi Syndrome Association of Wisconsin (PWSA), is the mother of a 16-year-old with PWS. She says these children are prone to obesity along with other challenges, and monitoring their behavior is a full-time job.

"The child never feels full; there are behavior problems and learning issues. Many families have to lock all access to food - all the cabinets, and the refrigerator as they get older."

If access to food is not adequately supervised, she explains, the inability to feel satiated can lead to potentially life-threatening medical conditions associated with obesity. Larson says advances in medical technology can't do much for these children, but new PWS tests are a plus.

"We haven't found anything effective to help with weight loss. Fortunately, we've gotten much earlier diagnoses."

Caring for a PWS child can be very trying, adds Larson. While respite help is important, it is difficult to obtain because of these children's special needs. For more information about Prader-Willi Syndrome, reach the PWSA at 1-866-797-2947.

Glen Gardner, Public News Service - WI