Question: Female, 34, UPD.
Is there some age at which it will be appropriate for our daughter to stop taking female hormones (in the form of birth control pills)?
Nurse Lynn’s Response: Thank you for your question. The issue of Hormone Replacement Therapy (HRT) is more complicated than one would think. Please make sure to discuss any questions with your physician. Hypogonadism is common in PWS and is believed to be caused by hypothalamus dysfunction. It is important to understand the difference between treatment of hypogonadism and birth control management. I assume that your daughter is not taking birth control pills for the primary reason of preventing pregnancy. Remember that our ovaries produce estrogen, which helps overall bone health. Hypogonadism in females can lead to decreased bone density, among other things. For this reason, many PWS females are started on some type of HRT. Getting a DEXA (a kind of X-ray that measures bone mineral density), scan every 2-3 years, and recommended labwork is important for determining overall bone health and medication needs. When to stop taking this medication should be discussed with your physician after review of test results and knowledge of your daughter’s overall health picture.
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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.