Support for Adults

People with Prader-Willi Syndrome (PWS) have aspirations for life, like we all do. They will appreciate your support to help them strive for their goals, safely and productively, they are an absolute joy to be around and are some of the most charismatic, friendly and caring people you will meet.

Adults with Prader-Willi Syndrome (PWS) enjoy getting out and about in the community. They love to chat and have a joke. As you get to know them, you will discover that they have many different interests and life experiences – no doubt they will be happy to share these with you.

Also, around this time, if not already experienced, you may notice a preoccupation with food that has now become obsessive and a constant need for food has become uncontrollable. In very few Prader-Willi Syndrome cases during adulthood, the appetite is no longer insatiable and can be controlled.

The International Prader-Willi Syndrome Organisation (IPSOW) provides information on their website to help us understand the hunger drive in people with PWS. Their website states the following:

“To understand the importance of this hunger drive, try to look at Prader-Willi Syndrome as a ‘starvation’ syndrome rather than an over-eating one. Because of the dysfunction in the hypothalamus, there is no on/off mechanism that tells the brain, “I’ve eaten enough”. What happens instead is that the brain keeps telling the stomach, “you’re starving, you need food”, and the drive to find food overrides everything else”
International Prader-Willi Syndrome Organisation (IPSOW)

Many of the Challenging behaviours associated with Prader-Willi Syndrome are anxiety-related, therefore if you can reduce or eliminate the cause of the anxiety, you’ll reduce or eliminate the unwanted behaviour. Clear, concise and consistent communication is essential for management of PWS. It is necessary to communicate any changes of routine to the person with PWS as soon as possible. This will avoid any disappointment, which could lead to anxiety or unwanted behaviour.

The fertility of someone with Prader-Willi Syndrome is affected to such a degree that reproduction is rare. Sex education and safety is vital as healthy and ongoing relationships are not governed by sexual development.

It is hard to imagine feeling like this constantly while trying to live a life that is full and inclusive. To be able to face this constant challenge, amongst the many others that your child lives with, means that your child is incredibly resilient to the point that some would say they are Extraordinary.

With some guidance, people with PWS like to keep fit. They enjoy participating in many different activities such as swimming, basketball, bowling, bike riding and going to the gym. Life is always more fun with company and people with PWS enjoy activities with others!

Adults may experience premature ageing in middle age, becoming less mobile and needing more help with self-care. Considering that not many adults have received growth hormone treatment, we are yet to discover how this treatment will affect future generations of adults with PWS.

All adults need to participate in meaningful community activities, such as a hobby club, sports team, community programs and the like. This works well in a supported arrangement. Depending on their ability, adults with PWS can go to work in mainstream employment, supported employment or day programs. Sometimes they find open employment with a unique employer, but only part-time.

Always remembers that you have access to supports and services that can assist you throughout all stages of your child’s life. At this time, your energy should be focused on providing a loving, caring and a safe environment, so that your child is provided with every opportunity to live a full and inclusive life.