News

Join our mailing list to stay up to date

Interaction Disability Services – Prader-Willi Syndrome

Posted: May 29, 2017

May is ‘International Prader-Willi Syndrome Awareness Month’. You may have heard of the symptoms, but may not be familiar with the name. Prader-Willi Syndrome (PWS) is a rare and complex genetic condition, affecting roughly one in every 15-20,000 births each year.  Virtually no system within the body and mind is left untouched when this tiny amount of genetic material is found to be missing, duplicated, or altered.  The average lifespan for a person with PWS is around 30.

Associated problems include (but are not limited to);
·      High propensity to obesity due to lack of satiety, which can become life threatening
·      Mental illness including anxiety, bipolar and episodes of psychosis
·      Speech difficulties
·      Gastric complications like constipation, poor digestion and slow gastric emptying
·      High pain threshold – making it difficult to diagnose illness
·      Behavioural issues and emotional immaturity
·      Slow sensory reception and processing
·      Scoliosis
–      Short stature, small hands and feet
·      Lack of sexual maturity

Interaction is not only a generalist disability services provider, but also nationally and internationally recognised as a leader in the field when it comes to providing specialised accommodation, supports and Clinical services to people with Prader-Willi Syndrome.

Having had a long and outstanding relationship with two of the most well respected and recognised PWS professionals in the world, Interaction is excited to announce that in October 2017 we will be bringing Dr. Norbert Hödebeck-Stuntebeck and Dr. Hubert Soyer to Australia. This will be a ‘first of its kind in Australia’ training event for professional carers currently supporting people with PWS, designed to further educate and expand on their knowledge and skillset, with the most up to date comprehensive information.

The number of spaces available is limited due to the structure and intensity of the training.  Individuals will be required to attend over 5 consecutive days in October 2017, with 6 one on one Skype follow-ups with Dr. Hödebeck-Stuntebeck and Dr. Soyer, followed by another 5 days training in March 2018.  The training has been widely and successfully implemented across Europe and other parts of the world, with Interaction to be the first organisation to bring this opportunity to the Australian PWS community.

“PWS is rare – not nearly as well known – yet just as important as any other genetic disorders”, says Craig Moore – Interaction CEO.  “The number and severity of its symptoms and associated problems affects every system in the body.  Interaction has recognised the need for quality PWS services and training for many years, and continues to raise awareness, and to create and implement strategies to ensure that people with PWS can live long and healthy lives.”

In addition to the exclusive training on offer, Interaction is expanding its PWS support services through the ‘Empowered Living Apartments’ accommodation model, bringing together the PWS community, and jointly working with professionals and advocates towards a better future for people with PWS and their family/carer network.

Submissions for Expressions of Interest to attend Interaction’s exclusive training event will commence in July, when further information will be available on the Interaction website – www.interactionservices.org and Interaction’s dedicated PWS website – http://praderwilli.com.au/   In the meantime, please contact Jenny Celebrin (jcelebrin@interactionservices.org) for information specifically related to this not to be missed PWS training event.
For all media related enquiries please contact:

Jenny Celebrin
Marketing & Communications Manager
jcelebrin@interactionservices.org
1300 668 123
0412 622 470