Often the severity of a clinical symptom may be underestimated until the condition warrants immediate attention, therefore caution should be taken in interpreting a seemingly minor complaint in someone with Prader-Willi Syndrome
People with Prader-Willi Syndrome are affected from birth throughout all stages of their life. The challenges they experience change throughout the different stages, however each stage consistently presents with real, significant and potentially life-threatening issues. A multi-disciplinary, holistic, coordinated and proactive care team is essential across the lifespan of someone with Prader-Willi Syndrome to ensure quality of life can be achieved.
A holistic and multidisciplinary approach starting from the neonatal period is recommended to ensure optimal management to improve the quality of life of Prader-Willi Syndrome patients throughout their lifetime. For a successful transition from childhood to adulthood, a multidisciplinary team needs to share clinical information, and should keep the same policy about food, environmental, and psychiatric interventions.
Research has shown that Holistic care and integrated services have been proven to deliver better outcomes for people with Prader-Willi Syndrome.
A group of clinicians have established a series of guidelines for the treatment of people with Prader-Willi syndrome. The guidelines are being implemented in hospitals around the USA and it is our hope that these guidelines will be adopted here in Australia.
The guidelines have been described in the study “A multidisciplinary approach to the clinical management of Prader-Willi syndrome,” published in the journal Molecular Genetics & Genomic Medicine. and a copy of the study can be found here.
Currently, there is no medication available to cure Prader-Willi Syndrome, but there are viable treatments and interventions to assist with many of the symptoms/characteristics of Prader-Willi Syndrome.
