PWSA Blog

two x-ray images of adults with Prader-Willi syndrome and scoliosis

Scoliosis Awareness

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.

Share this!

Scroll to top