The rare syndrome that is taking over lives around Australia

1 min read

Low muscle tone, behavioural problems and obesity are all characteristics.

When you’re in your own day to day routine, it can be easy to take your health for granted. 

At the age of five, young Dylan was nonverbal.

Teagan has been wearing glasses since she was 18-months-old.

Benjamin had to practise his physiology exercises everyday. 

Jayden picks at his skin when he is anxious or bored.

Cooper gets growth hormones every night. 

And nine-year-old Andrew undertakes speech, physiotherapy, occupational therapy and psychology sessions every week.

These six children have one thing in common though, they are all affected with Prader-Willi Syndrome (PWS). If you haven’t heard of PWS, don’t feel bad because this is why we’re writing this article - to bring awareness.

According to Prader-Willi Syndrome Association’s website, PWS is a rare and complex spectrum, non-inherited genetic disorder in which several genes on the 15th chromosome are deleted or unexpressed. 

It can be characterised by low muscle tone, behavioural problems and a feeling of never feeling satisfied when eating which can lead to obesity.

It affects approximately 1 in 15,000 people and impedes growth, metabolism, IQ and cognitive function. 

The PWSA is currently working hard to support those with PWS and their families. If you want to help out, you can donate via the PWSA website.

Funds go towards; activities for those who have Prader-Willi Syndrome and their families/carers, PWS information and training sessions that aim to increase awareness in our community and the promotion and support of research through the Prader-Willi Research Foundation Australia.

Image credit: Getty Images/AgFang

Written By Christina Cavaleri

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