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Rheumatic Heart Disease Australia

RHD Resouces

Storytelling and Leadership – Highlights of the RHDAustralia Queensland events

Storytelling and leadership were highlighted as key factors to ending rheumatic heart disease in Australia at a series of events held in Brisbane on 22 and 23 March. Over 200 Queensland healthcare professionals attended a workshop, which was presented by RHDAustralia and the Queensland RHD Control Program and supported by Heart Foundation Queensland.

The workshop provided health professionals with the opportunity to learn best practice approaches to the prevention, treatment and management of rheumatic fever and rheumatic heart disease (RHD) and hear the latest developments in RHD control in Australia. The workshop also laid the groundwork for potential policy change and highlighted the importance of collaboration at a National and State level to address this issue.

Rheumatic heart disease is a significant public health issue in Queensland; recent audits undertaken by the Queensland Department of Health have uncovered a previously unknown burden of disease in urban centres with approximately 380 new cases identified in the past 12 months. This is in addition to over 2000 people already on the rheumatic heart disease register in Queensland and over 6000 people on registers across the country.  Of these approximately 40% are under 24 and at risk of premature death or disability.

During the workshop many patients related their personal stories with RHD most particularly Eddie Masina, a Djiru man from Mission Beach, North Queensland now living in Townsville. Eddie shared his journey which started at age 5, and told how the disease has impacted on his life with 5 open-heart surgeries and a stroke occurring in his 34 years. As a result, it has affected his family, his employment opportunities and his education attainment. His story highlights the need for early detection and diagnosis by informed clinicians.

The Hon. Ken Wyatt, AM, MP - Assistant Minister for Health and Aged Care, a keynote speaker at the events, paid tribute to Eddie and focussed on the need to utilise old traditions of storytelling to spread the word amongst Indigenous communities. 

He said, "Eddie, your story, is an important story because if we're going to change health and the health outcomes of our people we need to hear the stories from those who've been affected. 

" ...the work you do, what you think is not important, it is actually absolutely critical because you are keeping our story tellers and our cultural knowledge as a part of life. And you are perpetuating our culture through the work that you do. The work that we do collectively to keep alive people much longer means families and the communities have the opportunity to share the knowledge. Closing the gap is a challenge to achieve that requires a concerted effort by all.

"Because if we are to make a difference, then collectively we as Australians, not just governments, we as Australians, need to work very closely but more importantly we need to encourage people like Eddie to become the storytellers so that we develop the understanding. In the past our elder women and mothers taught the next generations of young women about those things that kept us healthy and strong, that enabled us for 40,000 years to live on this continent and grow in number and strength. We seem to have stopped that, which is a pity because I think if we start to go back to the sharing of knowledge in a way that is culturally appropriate and built around our matriarchal system then I think we will see some changes emerge."

You can read more about Eddie’s story here.  

Do you have a rheumatic heart disease story to share?

Those in attendance were motivated by Eddie Masina to do more, learn more and advocate more for those living with this disease, and to safeguard future young generations from the damage done by this devastating disease which is a marker of poverty and disadvantage.

Oral storytelling is at the heart of Aboriginal and Torres Strait culture.  The stories of those affected by rheumatic heart disease – patients, families, communities – must be heard, they are a catalyst for action and inspire and inform improved practice. If you have or know someone with a story to share you can contact RHDAustralia

RHDAustralia sincerely thanks all those who attended, presented  and supported the events

A special thank you to Eddie Masina, Marita and others for sharing their story, and the Hon. Ken Wyatt, AM, MP (Assistant Health Minister) and the Hon. Cameron Dick (Queensland Health Minister) for being part of the RHD education and awareness raising events in Brisbane. Thank you also to Heart Foundation, the Queensland RHD Control Program and Bupa for supporting the events.