Adult with PWS

Adult with PWS Adult with PWS

There are a number of changes that you may need to deal with once a person with PWS becomes an adult. They may be leaving school, transferring from child health services to adult health services and possibly wanting more independence. The information provided below will help you through this particular part of your journey.

Many adults often leave home to live in residential care or supported living. Trained and committed care staff are essential for the well-being of people with PWS.

PWS Journey

The following links are sections from the PWS Journey - a guide for parents containing information to help them navigate their way through their child's journey from birth through adulthood. Families can obtain a hard copy of the whole PWS Journey, which is updated as their child reaches the next age range, by becoming a member of PERSATUAN SINDROM PRADER-WILLI MALAYSIA


Healthy Futures Pack

Our Healthy Futures Pack has been put together specifically for those with PWS aged 16 and over. Written in an easy read format, topics include social life and hobbies and relationships. To download a pack, click here.

- Healthy Futures Pack (PDF)

Our ‘Healthy Futures’ packs have been kindly funded by Aviva.

All About Me

‘All About Me’ is a simple booklet, designed to enable you to record your son or daughter’s routine, unique characteristics and what you feel is important for people to know about them. This can then be given to those involved in their lives such as childminders, chaperones, teaching staff and extended family members.

- All About Me booklet (PDF)

Residential Care & Supported Living - information for parents (The Future)

When the time comes for a person with PWS to move out of the family home and into a residential care or support living setting, there are a number of factors to consider when choosing the right option for that individual's needs.

We recognise that this transition to more independent living can be a daunting prospect for many families, which is why we have prepared a series of downloadable guides setting out the available options and the considerations to be taken into account.

These guides are presented under the collective title 'The Future' and include a flowchart guiding you through the process with quick references to the relevant guides for each section.

Please click on the links below to download each document:

- Residential options for adults with PWS (PDF)

- How to access funding for residential options for adults (PDF)

- Considerations when selecting residential options for adults (PDF)

- Families and care providers working together (PDF)

- Moving out of the family home (diagram) (PDF)

Residential Care & Supported Living - information for providers

It is rare for a person with PWS to live completely independently - most adults will either stay with their family or move into residential care or supported living. Whatever option is chosen, access to food and a restricted lower calorie diet must be in place to maintain a healthy lifestyle. Additionally, because of the challenging behaviour associated with PWS, a number of other support and management techniques are often needed.

More information can be downloaded here:

- Information for residential care and supported living staff (PDF)

- Important considerations for supported living (PDF)


Further Information
  • PWS by Age – (Link)
  • Basics of a Healthy Adult lifestyle – (PDF)
  • Good Health checklist for adults – (PDF)


PERSATUAN SINDROM PRADER-WILLI MALAYSIA creates awareness and provides accurate information among public citizen about Prader Willi Syndrome. We establish network of association with organization, agencies and professionals involves in providing treatments, trainings and education to the patients. Feel free to browse through our website for more details.


No. 132, Jalan Enggang, Taman Keramat, 54200 Kuala Lumpur, Selangor, Malaysia.
+6012-339 5232
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