June is National Scoliosis Awareness Month. Scoliosis is a condition in which a person’s spine has an irregular curve. According to Pediatric Orthopaedic Dr. Harold van Bosse, MD, “Children with Prader-Willi Syndrome have about a 70% risk of developing scoliosis before the end of growth.” It is important for families to be aware of the signs, risks, and treatment options for scoliosis.
At our 2023 United in Hope National PWS Convention, Dr. van Bosse spoke extensively about scoliosis in the PWS population. During “What’s That Orthopaedist Talking About”, he began with a brief history and overview of PWS in general, then spoke about the characteristics of musculo-skeletal issues in PWS (i.e. flat feet, pronation, osteoporosis, hip dysplasia, and moved on to the characteristics and treatment of scoliosis (side-to-side curve), hyperkyphosis and hyperlordosis (curves involving front and back alignment).
According to van Bosse’s presentation, prevention starts by delaying the upright sitting position until babies can pull themselves up into that sitting position. It is important to ensure your child has yearly screenings to check for the presence and progression of any curves. From there treatment options involve physical therapy, casting (for younger children which can affect the size of the curve), bracing (for older children to prevent the progression of a curve), and finally surgery (typically for curves 40 degrees and above).
Dr. van Bosse’s presentation was recorded and is available for viewing. Please take the time to watch and learn about the difficulties of scoliosis and why it is important to screen and treat early. Share the video link with your child’s doctor and please contact PWSA at info@pwsausa.org if you have any concerns that your doctor is not able to address.
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.