Founded more than forty years ago, the Prader-Willi Syndrome Association of Victoria has a long history of advocacy, awareness, education and support. It’s a history that they continue to build on today, creating new support networks and working to raise awareness of the rare and complex Prader-Willi Syndrome.
A spotlight on challenges
The Prader-Willi Syndrome Association of Victoria is running an awareness campaign this May to shine a spotlight in the challenges faced by people living with Prader-Willi Syndrome.
The campaign, called 15 for 15, will see participants take part in a 15-hour hunger challenge. One of the tell-tale signs of Prader-Willi Syndrome is hyperphagia or an insatiable hunger.
‘It’s about people challenging themselves for something for 15 days,’ said Renee Di Genova, President of the Prader-Willi Syndrome Association of Victoria.
‘The International Prader-Willi Syndrome Organisation describes it as like a starvation syndrome, where you just constantly feel like you’re starving.’ Ms Di Genova said.
‘Last year, we had people cooking only orange foods for 15 days. We had people doing gym challenges for 15 days. But this year we’re honing in on the hunger side of it. We’re challenging people to do a 15-hour hunger challenge and to upload videos about how they’re feeling during that time.
‘One of our board members did the 15-hour challenge. And he uploaded a couple of videos about how he felt during that time. Not only hungry, but the anxiety and the focus on food and feeling fuzzy and those thoughts and feelings that our children and adults experience every single day all the time.’
A complex condition
Prader-Willi Syndrome is a rare and complex, lifelong condition with no known cure. It’s also difficult to describe succinctly what the condition is. Some common characteristics include small hands and feet, small stature, low lean body mass, weak muscles, insatiable hunger, obesity and anxiety-driven behavioural outbursts.
‘It’s extremely complex. It’s not just one thing. And that’s the thing with Prader-Willi Syndrome that people find so hard to get their head around the fact that it is such a complex condition and it just can’t be summarized,’ Ms Di Genova
The Prader Willi Syndrome Association of Victoria was established in 1978 when a group of seven families with family members diagnosed with Prader-Willi came together to talk about the challenges they were facing. The original goals of the association were to support those living with Prader-Willi Syndrome and their families, to raise awareness of the syndrome, to educate professionals and to grow the membership of the association.
‘There wasn’t enough information out there. There wasn’t enough support for these family and they just wanted to do something to help people in their situation,’ Ms Di Genova said.
Many of the goals of the original families are reflected in the work of the Prader-Willi Syndrome Association of Victoria today.
‘We do advocacy, awareness, education and support. And that’s on the ground support. So, we do educational workshops to families—which is something that we provide ourselves—and that’s about Prader-Willi Syndrome and how to handle certain behaviours and what to expect and things like that. We also provide education to professional organizations such as schools, day care programs, group homes and things like that to talk about how best they can support someone with Prader-Willi Syndrome.’ Ms Di Genova said.
In addition, the association advocate to local governments and federal government and collaborate on research projects. They’re also launching a dedicated telephone counselling service that will be available to families and those with Prader-Willi Syndrome, for support, including financial support. They also provide peer-to-peer support events such as their Christmas party, family days and an annual camp, which is the associations biggest event of the year.
A camp for everyone
‘We run it a little bit different to other camps that are out there. We involve the whole family unit. It’s not just the person with Prader-Willi Syndrome.
‘The camp is designed to be inclusive… but it’s also around support for the family. We provide educational pieces to the family as well by professionals, so there’ll be guest speakers every day that come in and talk. Last year we had a gut health specialist. We also had a person from Carers Victoria come and talk to the families about looking after themselves.’
‘And it’s for all age ranges we have. I went when my son was one-and-a-half. And we have adults there that come every year that are in their 40s.’
A full and inclusive life
For the Prader-Willi Syndrome Association of Victoria, the goal is a world where people with Prader-Willi Syndrome live a full and inclusive life.
‘When we talk about full, we’re talking about a really full life. That they can be included in anything and anything they want to be. They can have every opportunity that everyone else has afforded to them. That’s what we are trying to achieve.
‘We try and provide hope to families that are just feeling really hopeless in their journey. Anything that we can provide to them that can help them along, that’s what we do.
‘Obviously as a family, just finding out about Prader-Willi Syndrome can be extremely daunting, and you read a lot of messages online and it’s very negative.
‘But we can provide some hope and let them know that it’s not all doom and gloom. Our kids are just so resilient and they bring us so much joy and yes, it’s challenging, but it’s such an amazing thing to see them grow and achieve.’
For more information on the Prader-Willi Syndrome Association of Victoria of the 15 for 15 campaign visit www.pwsavic.org.au
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