Abstract
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.
Highlights
Prader-Willi Syndrome (PWS) is a rare disease resulting from a deletion of the paternal alleles in the 15 q11–q13 region causing a neurodevelopmental disorder [1]
The needs of PWS patients change as they transition into adulthood and a new set of challenges come with this milestone and The Children’s Institute (TCI) consultation services is a resource that adult providers for community programs and ASL need to use to foster the best interest of PWS patients
A diagnosis of PWS is beyond medical care it is a holistic plan inclusive of all the needs a PWS patient will have in their life
Summary
Received date: July 25, 2018; Accepted date: September 10, 2018; Published date: September 17, 2018
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callMore From: Journal of Rare Disorders: Diagnosis & Therapy
Disclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
