Journal of Rare Disorders: Diagnosis & Therapy

PWS Preparations

Prader-Willi Syndrome is a complex chromosomal birth defect that causes neurological disorders, health issues, and insatiable appetites. Lifelong care for PWS patients is complex because their physical health issues cause psychological behavior issues that require unique strategies. PWS patients have unique needs in schools, community programs, and adult care programs and if they do not receive proper care it is life threatening. Therefore, parents must seek professional expert support to develop lifelong preparations with securities plans to foster the best interest of their PWS child. The Children’s Institute (TCI) Center for PWS in Pittsburgh, Pennsylvania and PWSA USA are resources for PWS expert support in America with over 20 years of experience. The challenges PWS families face with adult programs is a crisis that requires national support from the Department of Health and Human Services.

Author(s):

Rhoda L. Ross-Williams

Abstract | Full-Text | PDF

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