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What is Prader-Willi Syndrome?

Prader-Willi Syndrome (PWS) is a rare, complex, unique, multistage genetic disorder that affects 1 in 15,000 births. Males and females of all races and ethnicities are affected equally. PWS occurs randomly and is a result of an abnormality of the 15^th chromosome pair. The anomaly occurs around the time of conception and first cell division. Currently, PWS is thought to be an utterly accidental occurrence. It is not the fault of either parent and rarely reoccurs in the same family. A small piece of genetic material that is missing or not working on the 15^th chromosome is responsible for the characteristics that make up this syndrome.

How is Prader-Willi Syndrome Diagnosed?

Prader-Willi Syndrome (PWS) is diagnosed with a blood test that looks for the genetic abnormalities that are specific to PWS – called a “methylation analysis.”

How is Prader-Willi Syndrome Characterised?

Prader-Willi Syndrome (PWS) affects the part of their brain called the hypothalamus, which is responsible for the regulation of all the systems in the body and the resultant control of hunger, thirst, temperature regulation, pain and stimulation hormone production amongst others.

Is there a Cure for Prader-Willi Syndrome?

Currently, there is no known cure for Prader-Willi Syndrome (PWS). Research is finding that the lives of people with PWS can be improved with early diagnosis and careful management of symptoms.

What Treatments are available for Prader-Willi Syndrome?

People with Prader-Willi Syndrome (PWS) 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. The treatment of PWS is currently based on treating the symptoms of the disorder as they arise.