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For my family

Jan 17, 2024

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You, the immediate and extended family are a vital link in enabling the best possible life for your loved ones. Find a suite of information (written, video and links) to build your knowledge about PWS and learn what to do next.

As you would be aware by now, Prader-Willi syndrome (PWS) is a complex, multistage genetic disorder which affects multiple systems in the body. It significantly impacts on behaviour, mental and physical health. People living with PWS require cognitive, social, learning and health support throughout their lives. A person with PWS can live a healthy, fulfilling life when they have ongoing, consistent support from people who understand the intricacies of the syndrome.

PWS is a rare disability. Not many health professionals, support workers or the community have heard about it.
Not only that, the impact of PWS on individuals changes over time, with health and behavioural challenges.
It’s therefore really important to build your knowledge about PWS to give your family member the best chance of an ordinary life.
It’s also important to educate others in your family and beyond about PWS. Family care is vital too.

We encourage you to use the resources and articles on this site at times when you need that information. So, over to you to dip into the topics of most interest. The articles are grouped by age or category. Many of the articles have been written so that they can be shared with others in your network, to educate them about PWS. That education will enable providers and the mainstream community to give better support to the person living with PWS, helping them to grow, be safe and happy.

A starting point for families with a member living with PWS:
You are not alone. Consider sharing experiences with other families, spending time with family, focusing on the positive achievements. See ‘Caring for yourself and other family members’
Information for grandparents: Supporting the person and other family members, finding out, sweet treats, exercise, respite opportunities.
Information for brothers and sisters: What is PWS, why is my sibling different – the good and the bad, how can I help, is it OK to feel annoyed sometimes?

 

Funding from the NDIS can help. Over time support needs will change. You will need to meet the NDIS.

There is government assistance available to families with a loved one living with PWS. It includes Carer Payments, the Disability Support Pension (DSP) for the individual and other discount arrangements.

 

Emotional and practical services and support for carers through the Carer Gateway

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us