Question:
Female, 22 years-old, Deletion
Does the association have a letter or document of some type that could be given to a doctor in an emergency situation, in order to give them a quick understanding of PWS and the potential medical impacts? Perhaps it could even be attached to a PWS patient’s medical record so that all medical staff interacting with the patient could have the information. Before writing something up, I wondered if PWSA already has something like this available. Thank you.
Nurse Lynn’s Response:
Medical emergencies and even routine appointments can be incredibly stressful for caregivers and individuals with PWS. Many healthcare providers may not be familiar with PWS, which could lead to misunderstandings or a lack of recognition of symptoms.
Here are several resources for you to have in your toolkit. Use one or all. These documents could be stored in a “grab and go” folder for emergencies and should include a current list of medications, recent picture, and insurance information. In addition to the “grab and go” folder, have one or more of these sheets in your purse, diaper bag, wallet, etc.
Resources:
One-page important medical facts: Important Medical Facts about Prader-Willi Syndrome – IPWSO
Fact sheet for different age groups: https://www.pwsausa.org/resources-a-z-pws-fact-sheets/
Medical Overview: https://www.pwsausa.org/wp-content/uploads/2022/08/Medical-
Overview-revised-2022.pdf
ID card: https://www.pwsausa.org/new-customizable-pws-health-identification-card/
Medical Alert booklet: PWSA | USA – Prader-Willi Syndrome Medical Alerts Booklet
Many healthcare professionals also use an App called Up To Date, which also has information on PWS.
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.