Question:
Female, 22 years old, Deletion subtype
My daughter weighs 90kg and is physically active. What’s the average life expectancy? She doesn’t have high blood pressure yet but when would I know if she is going to get high blood pressure?
Nurse Lynn’s Response:
High blood pressure can result from several factors, including genetics, obesity, diet, smoking, alcohol use, diabetes, and sleep apnea. Based on the information you’ve shared, it sounds like obesity may be a key factor to address in order to reduce the risk of hypertension. It’s very encouraging that she is physically active—regular exercise is one of the best ways to help manage blood pressure.
We are now seeing individuals with Prader–Willi syndrome living into their 60s and even 70s, thanks to appropriate medical care, healthy diet plans, consistent therapy, and regular physical activity. Monitoring blood pressure at the doctor’s office or at home with a reliable cuff is a good idea. Keeping a written record of her readings and bringing it to medical appointments will help her physician make the best treatment decisions.
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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.
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.
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.
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.
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.