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About Prader-Willi syndrome

PWS is a complex, rare life-threatening genetic condition affecting multiple systems in the body. Whilst each person has a different experience of PWS, it comes with challenges and allĀ  will need knowledge and support.

Find out more

How it is diagnosed?

Clinicians will firstly observe indicative characteristics of the baby or child. A genetic test, through a blood sample is then done, to seek confirmation.

How is it characterised?

Often PWS significantly impacts behaviour, learning, mental and physical health. People living with PWS can exhibit high anxiety, complex and at times challenging behaviour, cognitive dysfunction, poor judgement and are often socially isolated throughout their lives. A defining feature of PWS is hyperphagia, a compulsive urge to over-eat. The characteristics change with age. Visit the international PWS organisation to learn more.

Is there a cure?

There is no cure for PWS, but people with the disorder can benefit from a variety of treatments to improve their symptoms. These treatments depend on the individual’s needs, but they often include strict dietary support or supervision, physical therapy, behavioral therapy, and treatment with growth hormone, among others.

Treatments

Treatments depend on the individual’s needs. It often includes strict dietary supervision/support, physiotherapy, speech and occupational therapy, behavioural therapy, and treatment with replacement hormones, among others.

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