“It’s not something a 12-year-old should go through”
Stephanie’s story
Stephanie is a proud Larrakia woman and a passionate advocate for First Nations heart health. Diagnosed with acute rheumatic fever (ARF) at just 12 years old, she spent much of her childhood managing fatigue, headaches and regular medical treatment. While other children were enjoying birthdays, holidays and family celebrations, Stephanie was often unwell.
After 21 years of regular treatment and care, Stephanie was able to stop her monthly injections and is proud to be living a healthy and active life with her family and community.
Today, Stephanie uses her lived experience to raise awareness of ARF and rheumatic heart disease (RHD) and educate others about the impacts of these conditions.
Through sharing her story, she is helping communities better understand ARF and RHD, while working towards a future where no child has to face the same challenges.
93% of ARF diagnoses occur in First Nations people
ARF can develop after a Strep A throat or skin infection. Repeated episodes of ARF increase the risk of permanent heart valve damage, a condition known as rheumatic heart disease (RHD). Early treatment and prevention can protect hearts and reduce the burden of RHD.
Turning lived experience into action
Through Stephanie’s experience with ARF, Steph has gained a deep understanding of the challenges many First Nations children, families and communities face.
Growing up with it was horrible. The headaches, the lack of energy, being sick all the time. It's your birthday, you're sick. Christmas, you're sick. You go away on a family trip, you're sick. It just ruined the fun times. It’s not something a 12-year-old should have to go through.
Stephanie
Rather than letting her experience define her, she has chosen to use it as a platform for change.
As a Champion4Change and First Nations heart health advocate, Stephanie shares her story to raise awareness of ARF and RHD, encourage people to seek support, and help communities better understand the importance of prevention and early treatment.
She is passionate about ensuring the voices of people with lived experience are heard and believes that education, awareness and community-led action are key to ending RHD in Australia.
We're all in
Taylor's story
