Sarah’s Story: Living With RHD

Feb 19, 2018 | Stories

At 12 years of age, Sarah* was flown out of her community after a week of feeling unwell, breathless and with rapidly beating heart. She was diagnosed with severe rheumatic heart disease. Sarah’s RHD was so advanced that she needed open heart surgery on two of the valves in her heart.

Although that operation has prolonged her life, Sarah and her family live with the consequences of RHD every day. She must be constantly vigilant for signs of disease recurrence. Every 28 days she must have a painful antibiotic injection to prevent a recurrence of acute rheumatic fever. Every six months she must travel six hours for specialist follow up and it is likely that she will need further surgery in the future.

A great sadness of Sarah’s story is that all of this could have been prevented. Sarah had presented to hospital twice in the previous two years with signs of rheumatic fever which weren’t identified or acted on. Improving the social determinants of health in Aboriginal communities and raising awareness among the health sector and the wider community are crucial to prevent this happening to another child.

*Name has been changed to protect identity

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Together with governments, community groups and people like you, we’re coming together to amplify the voices of those living with rheumatic heart disease, and formulating a plan to end it.