Pradar-Willi syndrome (PWS) is a complex genetic disorder that affects both girls and boys of all backgrounds and ethnicities equally. PWS affects an estimated 1 in 10,000 to 30,000 births and is the most common genetic cause of life-threatening childhood obesity.
PWS is caused by a genetic change or deletion of chromosome number 15. The genetic changes that cause PWS occur by chance and it is not inherited.
Some symptoms of PWS during infancy include:
Early intervention should begin as soon as a diagnosis of PWS has been made as it can result in significant improvements in gross motor, fine motor, communication and oral-motor skills. Physiotherapy may focus on improving mobility, muscular strength, coordination, and endurance. Occupational therapy may target improving upper limb strength, upper extremity function, and posture to support activities of daily living, such as dressing. Speech and language pathology may support with increasing speech intelligibility (i.e., ability to be understood), developing expressive (i.e., using) and receptive (i.e., understanding) language and developing oral motor skills related to feeding in the early years such as sucking. Lastly, a dietician may be a part of your child’s multidisciplinary team to support nasal-gastric tube weaning and developing a feeding plan.
As a creative and dedicated physiotherapist, Pauline always strives to create a supportive environment for kids to develop the confidence and competence to reach their goals. She believes in making therapy fun, interactive, and individualised so that it is enjoyable and meaningful to each child. You can spot Pauline at NAPA with the biggest smile, colorful socks, and contagious enthusiasm & positivity.
NAPA specialises in working with children with physical and neurological delays. In addition to working with children with more common diagnoses such as cerebral palsy and Down syndrome, NAPA has a special interest and expertise with children with rare, multiple and complex conditions. NAPA Centre’s Intensive Model of Therapy (IMOT) is world-renowned, and one of the leading clinics in Australia for paediatric therapy programs with a large multi-discliplinary team of Occupational Therapists, Physiotherapists and Speech Therapists all working together. Families routinely travel from all parts of Sydney, the NSW region, from across Australia and even from the Australasian region to access NAPA’s unique and effective programs for their children.