An Endgame for Rheumatic Heart Disease in Australia: Tenaya's Story
An Endgame for Rheumatic Heart Disease in Australia: Tenaya's Story
Aged just seven, Tenaya underwent emergency life-saving surgery to repair her heart valve as a result of developing rheumatic heart disease (RHD), the leading cause of cardiovascular inequality for Aboriginal and Torres Strait Islander children in Australia.
Now, through the power of collaboration between researchers, the Aboriginal Community Controlled Health Sector, clinicians and government, we have the RHD Endgame Strategy: The blueprint to eliminate rheumatic heart disease in Australia by 2031. Read more: telethonkids.org.au/rhd-endgame
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8.7 -> I spent months in hospital.
13.04 -> I remember waking up but I
couldn't remember what happened.
20.5 -> I felt really scared being away from home.
39.44 -> In 2018, at the end of the year, the last
two weeks of school,
45.48 -> I knew something wasn't right.
48.92 -> Tenaya was getting sicker every day, and I
just noticed her losing weight and not having energy.
57.719 -> I didn't really know much about rheumatic
heart disease (RHD).
61.289 -> So, I really didn't know what to expect.
65.19 -> Her oxygen levels started to drop, so she
had to get put on oxygen
70.66 -> and flown straight to Perth.
73.82 -> When we got there, they called the doctor
from ICU down.
86.38 -> Tenaya was on the edge, she was brought to
Perth to Intensive Care
92.56 -> underwent two open heart surgeries.
96.12 -> She would have died if she
didn't have those operations.
100.44 -> They did x-rays and found out her heart valve
wasn't shutting properly and so they had to
109.56 -> put her on a life support machine.
112.32 -> I mean no child should have to experience
open-heart surgery for goodness sake.
116.909 -> We live in Australia, we're a first-world
economy, and yet out people are subjected
121.78 -> to living conditions that bring this disease
on, when it has totally
126.281 -> been eliminated in mainstream Australia.
130.5 -> There's no cure for rheumatic heart disease.
132.5 -> The mainstay of treatment is monthly penicillin
injections.
135.74 -> If you don't get those injections, you're exposing
yourself to getting rheumatic fever again
141.02 -> and that can be catastrophic.
145.22 -> It was scary when I got to hospital because
I don't like the needles.
150.54 -> We know how to deal with it.
152.5 -> We can signal the end of rheumatic heart disease
in Australia.
155.9 -> We can implement the Endgame Strategy and
we can end RHD, so that kids in the future
162.28 -> won't have to go through what Tenaya went
through.
169.97 -> The Endgame Strategy has been five years in
the making, building on decades of research
176.78 -> around understanding what it will take to
control this disease and in fact, to eliminate it.
183.78 -> In the Endgame Strategy, we identify five critical
elements to get rid of rheumatic heart disease.
190.67 -> The first, is that Aboriginal and Torres Strait
Islander leadership is essential.
196.6 -> The second, is the importance of community-based
programs.
203.1 -> The third, focuses on making sure that environments
are healthy.
208.34 -> The fourth, means focusing on early prevention.
215.86 -> And the fifth, is around caring and supporting
those who already have rheumatic heart disease.
225.17 -> And all of those things need to be done together
because there is no silver bullet to actually
231.66 -> get rid of rheumatic heart disease.
237.6 -> Tenaya is just a full on outgoing kid.
242.82 -> She tries anything, and she will do anything, like sports.
248.54 -> She doesn't get embarrassed about the scar.
251.9 -> She'll walk around town with no shirt on still.
257.74 -> I feel very, very proud of Tenaya.
260.14 -> You know, she has been through so much already
in her life.
263.79 -> She is just amazing.
265.44 -> You know, what a strong little soul she has.
270.08 -> But she also wants to be a footy player she
said.
272.48 -> She wants to play for the Eagles (laughs).
281.66 -> Australia will be rid of rheumatic heart disease
if we are able to implement our Strategy
289.16 -> and have it led by our people, so that we can
eliminate all the risk factors and the fear
295.46 -> of anyone contracting this debilitating illness ever again.
301.02 -> We now have the blueprint to end rheumatic
heart disease in Australia.
305.6 -> If we do this, we give kids like
Tenaya, around the country
310.84 -> an opportunity to live their lives to the fullest.
315.82 -> Kids like me need your help.
Source: https://www.youtube.com/watch?v=DLLcs7zg44M