Question:
Female, 30 years old, UPD subtype
Should a person with PWS use the same BMI ranges as someone without PWS? We are trying to figure out a good goal weight range for my loved one. Currently, her BMI is around 20 – which her PCP says is normal. Is this a good measurement to use in determining the healthiest weight for her, or should her BMI be lower than “typical” ranges due to hypotonia?
Nurse Lynn’s Response:
Your loved one’s BMI of 20 falls within the acceptable range — which is great for someone with PWS. It suggests she’s maintaining a good balance for long-term health, energy, and mobility. Since BMI doesn’t tell the full story in PWS, some doctors and dietitians may also look at:
- Waist circumference(goal: < 35 inches for women)
- Body composition(DXA scan or bioelectrical impedance)
- Energy level, muscle tone, and endurance
- Metabolic labs(lipids, glucose, insulin resistance)
The BMI guidelines for adult women with PWS are as follows:
<19.1= underweight
19.2-27.3= acceptable
>27.3 = overweight
>32.3 = Severely Overweight
> 44.8= Morbidly Obese
Resources:
https://www.pwsausa.org/wp-content/uploads/2022/12/Nutrition-Adolescence-Adult-Revised-Aug-2022.pdf
The above link will help inform about goal weight setting and calories per day along with other great nutritional information for adults with PWS.
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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.