Living With Rheumatic Heart Disease
Living With Rheumatic Heart Disease:
Wesly & Valder
Photos courtesy of Cristina Baussan
Wesly Marcena is a 19-year-old young man who lives near Port-au-Prince, Haiti. When Wesly was 13, he fell ill from rheumatic fever which severely damaged his heart.
People living with RHD are at the heart of RHD Action's work - they are our most important stakeholders and we strive to be accountable to them in all that we do. The global community of people living with RHD is diverse and vibrant - we are sharing stories and perspectives by profiling individuals, to elevate their voice and empower them as patient advocates.
'For too long, people living with RHD have experienced widespread neglect and marginalisation,' says Jeremiah Mwangi, Director of Policy and Advocacy at the World Heart Federation. 'By increasing our patient advocacy efforts and sharing stories of living with RHD, we hope to give the disease a 'face' and a 'voice' on the global stage, to compel international decision-makers to act.'
Our first RHD stories (written in collaboration with the Haiti Cardiac Alliance) are from Haiti, a low-income island country located in the Caribbean. They follow the lives of Wesly and Valder, two young men who both struggled with poor access to diagnosis, and eventually experienced very different health outcomes.
'Both young men experienced the trauma of complex cardiac surgery - despite this being entirely preventable', says Liesl Zühlke, Co-Director of RhEACH. 'We are grateful to Valder, Wesly and their families for sharing their stories, so that we can learn more about the health inequities they experienced, and act to redress these gaps.'
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