Question:
Female, 17years-old, UPD
2 Questions for you: It’s about myself for my knowledge of my condition. How many times out of ten do people with my disability start their period by themselves? And if they don’t start on their own after you take medicine to induce it, will they start on their own the rest of the time?
Nurse Lynn’s Response:
Here is a little background:
Hypogonadism is the condition in which the production of sex hormones (estrogen/testosterone) and germ cells (ova/sperm) are inadequate.
PWS children may start secondary pubertal changes on time or slightly delayed.
Majority have incomplete development with low sex steroid levels, poor growth spurt, amenorrhea or oligomenorrhea in girls.
According to a study published in 2023 that had 41 women participating, 11 (27%) had spontaneous menses starting at age 14 to as late as 31 years.
The answer to your second question is not as clear. Some may start on their own after medication is started while others may not. I have included 2 articles that you may find helpful.
Resources:
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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.