Making a difference to type 1 diabetes families in WA
Being diagnosed with diabetes at any age would be devastating and most adults would struggle to come to terms with the lifestyle change. Consider a child being diagnosed with type 1 diabetes, a chronic and sometimes debilitating disease that overwhelms and shocks a whole family unit. The entire family network is affected and the physical and psychological strain severely disrupts family dynamics until medical management is fully understood and managed. Children, who can be diagnosed as newborns right up to young adults, all face a life dependent on self-administered insulin. For parents with young children, this means getting over the initial shock and bewilderment caused by the life changing, life- threatening disease that will need constant monitoring and an immediate change to their pretype 1 lives.
So prevalent in today’s society, type 1 diabetes is the body’s inability to produce the hormone insulin, which is necessary to turn carbohydrates from food into energy. Diagnosis requires, not just daily insulin injections and constant blood sugar monitoring, but a complete lifestyle shift, and one that has socio-psychological effects and can leave a family in tatters. Parents, siblings and extended family members need to play an active role in the complex daily management of type 1. It affects over 120,000 Australians and approximately 2000 cases are diagnosed per year. There is no known cause, and scientists have been baffled for many years about the onset of type 1 diabetes, but extensive cure research gives hope to the diabetes community worldwide.
Step in The Telethon Type 1 Diabetes Family Centre in Perth’s northern suburb, Stirling. The Family Centre is proudly the first of its kind in Australia offering support to families with children diagnosed with type 1 diabetes. The focus of the centre is to engage the type 1 community and provide holistic care services that include social and psychological support in a caring and safe environment. Educating those touched by type 1 and
providing a community-based care environment is first and foremost the aim of the centre.
Rebecca Johnson, Chief Executive Officer of the Type 1 Family Centre, is passionate about bringing families together to form a network with the goal of successful management of type 1 diabetes. Her team provide family support camps, social and educational events, online support, peer networking opportunities, cooking and dietary workshops and much more; all to provide the emotional and physical support needed by the type 1 community.
Having been diagnosed with type 1 herself in her teens, she is all too familiar with the rollercoaster ride that is type 1 diabetes, and is fully aware of the complex nature of the correct management of type 1.
She admits she felt confused, dazed, and “lost” when it came to managing her blood sugar levels in the early days. “You know you have to do it right to survive. It is a life threatening illness that is with you for the rest of your life.”
The seemingly complex management of type 1 is overwhelming when terms such as “bolus”, “basal”, “hyperglycemia”, “hypoglycemia”, “ketoacidosis” and “CGM” are thrown around in conversations between families. Educating the children and families of type 1 is paramount and thanks to the generosity of West Australians through Telethon, and other generous sponsors such as the West Australian government and Lotterywest, the Telethon Type 1 Diabetes Family Centre is a godsend for new families indiscriminately thrust into the type 1 world who desperately need guidance and support..
Only in operation since mid 2015, it now has over 250+ families being educated and supported in a peer network. It is reliant on fundraising and the continuous generosity of members of the community. “We are building a supported, informed, connected type 1 community in WA, but receive no government funding to do our work. Fundraising is a necessary priority and we welcome support.’
Ms. Johnson and her team are adamant in supporting type 1 kids and their families through balanced food choices, vital education sessions on blood glucose monitoring, informed guest speakers and just as importantly, social events, such as camps, bowling
and fun days out, to create an awareness in the type 1 community, as well as the far reaching community.
The facility is impressive and creates a relaxed “homely” environment, with vibrant colours, bright and modern furnishings proudly donated by IKEA, a fully equipped kitchen and a soon to be completed BBQ outdoor entertaining area with an integrated playground that will be an attraction to young children and older teens.
All family members are welcome at the centre, where the focus is on caring for children through to young people with type 1.
One parent from the centre expresses their gratitude, “My son’s life, and ours, will be forever enriched and supported because someone who cared enough about kids with type 1 had the vision and perseverance to create the Family Centre and see it through.”
An avid cyclist and sports person herself, Ms. Johnson cannot stress enough the importance of a healthy and active lifestyle for type 1 children and their families. Regular sports promotion and education workshops are run at the centre to emphasise the importance of sports in the lives of the type 1 community. Check out the events calendar, which is busy all year round, ultimately lending a hand to improving the lives of those living with type 1 diabetes.
Photo courtesy of Community Newspaper Group Western Australia
You know you have to do it right to survive. it is a life threatening illness that is with
you for the rest of your life.
type 1 facts
Type 1 is an autoimmune condition.
There is no cure and it cannot be
Type 1 can occur at any age but it often
occurs in children and young adults.
$1.6b the cost of Type 1 on the health
Australia has the 6th highest rate of type
1 diabetes in the world
2000 the number of diagnosis per year
122,330 number of T1D in Australia
6 new cases diagnosed every day.
will encourage “The Centre’s programs
each stage my son’s growth throughout
our of his life whilst also supporting
parents walk with him. They offer
carb Solution Forums to discuss
transitioning counting, exam stress, and
offer into high school. They even
a grandparents and neighbours
can have babysitting course so parents
a worry-free evening away.”
Dan and Michelle Hayes with baby Jack, are one of the many families benefitting from the Telethon Type 1 Diabetes Family Centre.