Question:
Male, 36 years old, Deletion
It was suggested to me by a doctor (not a PWS specialist) that those with PWS are deficient in the hormone leptin, and that replacing it could be an alternative way of helping with hyperphagia. Have you heard of leptin supplement as a treatment for hyperphagia?
Nurse Lynn’s Response:
For individuals with PWS, one of the biggest challenges is hyperphagia, or constantly feeling hungry and wanting to eat all the time.
Some people wonder if giving leptin—a hormone that normally helps the brain know when you’re full—might help. But in PWS, the problem isn’t that there’s not enough leptin. In fact, many people with PWS have normal or even high levels of leptin.
The issue is that the brain doesn’t respond to leptin the way it should. This happens because the part of the brain called the hypothalamus, which controls hunger and fullness, doesn’t work properly in PWS. This is due to the genetic differences that cause the syndrome.
So, even if there’s plenty of leptin in the body, the brain doesn’t “hear” the signal that says, “you’re full.” That’s why simply giving more leptin doesn’t help with the constant hunger in PWS.
Resources:
https://pubmed.ncbi.nlm.nih.gov/9450849/
https://pubmed.ncbi.nlm.nih.gov/9497896/
Do you have a non-emergency medical question for Nurse Lynn? Submit your question here:
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.