Lived experience underpins all our work within the Centre. Our Consumer Representatives, who work across individual projects as well as being embedded in our governance structure, provide an opportunity for those experiences to be considered, recognised, valued and create impact on our research.
In this edition we find out why Paige, who lives with T1D and has a family history of the condition, came to be involved in our research and what she finds challenging the most that research will hopefully change in the future.
Can you tell us a little bit about your T1D journey?
I was diagnosed with type 1 diabetes (T1D) when I was four years old, growing up in a small country town where there was a lot of stigma and misunderstanding around diabetes. My mum was abused walking down the street for things such as “feeding me too many lollies” and parents told their children not to hold my hand incase their child caught it. Because of that, I spent a large part of my life hiding my condition. I didn’t want to be seen as different, and for many years it felt easier to keep it to myself.
As I’ve grown older, my perspective has changed. Instead of hiding my diabetes, I’ve realised how powerful it can be to share my story and use my experience to help others and challenge the stigma that still exists.
T1D runs strongly in my family. My father lives with T1D, and so does my child’s father. Knowing that my child has two parents with T1D makes me even more determined to be part of creating change. If my child is ever diagnosed, I want them to grow up in a world where diabetes is understood, supported, and never something they feel they have to hide.
What led you to become a Consumer Representative?
I was introduced to the consumer group by my friend Tia Bravery, who is also a Consumer Representative. Tia has always been someone I can lean on, and when she spoke to me about the opportunity, it really resonated with me.
Over the past few years, I’ve taken part in several T1D events and community activities, and becoming a Consumer Representative felt like the next step. It gave me the chance to take my lived experience and turn it into something meaningful by helping shape research, conversations, and resources that could improve the lives of others living with T1D.
What have you been involved in so far?
I have been part of the group for around 12 months and was fortunate enough to attend the symposium in Perth in 2025. It was an incredible experience to be in a room with researchers, clinicians, and others who are passionate about improving outcomes for people living with type 1 diabetes.
I am also currently a research buddy for Dr Sarah Black, who is developing resources to support people in the early stages of being diagnosed with T1D. This project is especially meaningful to me. When I was diagnosed in a small country town there were very few resources and very little support available. Being able to contribute to something that could make those early days less overwhelming for someone else is incredibly rewarding.
What do you hope will come from being involved?
I hope that by sharing my lived experience, I can help influence research and resources in ways that truly reflect the realities of living with T1D.
I am particularly passionate about reducing stigma and improving support for people who are newly diagnosed, especially in rural or smaller communities where resources can be limited. No one should feel alone, ashamed, or unsupported because of their diabetes.
Would you recommend others to join?
Absolutely. Being part of the consumer panel has been an incredibly rewarding experience. It gives people living with T1D the opportunity to have their voices heard and to contribute to meaningful change within the diabetes community.
For so many years I hid my diabetes, but now I realise that sharing our stories is one of the most powerful ways we can create change for the people who come after us. 💙
If you would like to be involved as a Consumer Representative please email community@childrensdiabetesresearch.org.au to find out more.