Keys to living well with Prader-Willi Syndrome

While not everyone has heard of Prader-Willi Syndrome (PWS), it impacts around 1500 Australian families. It’s a complex genetic disorder caused by a chromosomal abnormality, which happens spontaneously.

Department of Human Services staff member Sonia has a son Liam who was diagnosed with Prader-Willi Syndrome (PWS) when he was four months old.

“I realised Liam wasn’t developing like his older brother and sister when he was born,” Sonia explained. “When he was diagnosed with PWS, we were told that his body doesn’t make its own growth hormone, so he needs injections every day until he stops growing.

“He also can’t control his own body temperature, so he really feels the hot and the cold. If it gets hot, he gets extremely tired.

“It’s easy for him to gain weight because he doesn’t know when he is full, and can’t exercise and run around like other kids because of low muscle tone. This is the biggest risk factor of PWS, it has the most impact on day-to-day life and can have serious health implications in the future.

“Every day is a new one and we have to adjust what support he needs to achieve this.”

Five years ago, Sonia knew very little about PWS, but wanted as much support as possible for her son to enjoy the same opportunities as other children his age.

“Our pediatrician was great – she stuck by us and really helped with his development and our goals for him,” she said.

Sonia aims to educate parents about PWS so more children can receive the support they need as early in life as possible. She believes that support and education are keys to living well with PWS.

Today in Australia, there is support for people with PWS. The Prader-Willi Research Foundation Australia aims to improve the wellbeing of and increase social and economic inclusion for families touched by the syndrome.

“I’m so grateful to have the support of the Prader-Willi Research Foundation Australia,” said Sonia. “It’s great to meet like-minded parents, ask questions and share experiences.”

More information

  • Learn more about Prader-Willi Syndrome
  • Read the department’s Education guide – services available in the Medicare Benefits Schedule (MBS) for the Better Start for Children with Disability initiative.