World Heart Day 2018: People at the Heart of the RHD Community
Happy World Heart Day! On this day and every day, people are at the heart of the RHD community: both those living with the disease and the health workers who care for them. On World Heart Day this year we would like to take the opportunity to amplify some of their stories which they have shared with us over the last few years with the aim of raising awareness of rheumatic heart disease.
People living with RHD (PLW RHD) are the primary stakeholders of RHD Action: indeed, RHD Action is ultimately accountable to these individuals and their families. To date, the experience of living with RHD has been relatively hidden. In most of the world, PLW RHD remain isolated from each other and from the global conversation about ending this disease. Learning from the experiences of successful patient advocacy in HIV control, we are connecting PLW RHD, amplifying their voices, and learning from their experiences. In this way, we aim to reliably address the needs and priorities of the people who matter most.
We share some of their stories below:
Christine and Flavia are both from Uganda and as well as living with rheumatic heart disease they also have a shared passion for patient advocacy. Christine and Flavia's experiences living with rheumatic heart disease have provided insight and fuelled their passion to support other people living with RHD not only in Uganda but across the globe.
Dilys Kemunto is a medical student at Moi University and a member of the Young Professionals Chronic Disease Network (YP-CDN) in Eldoret, a city in Uasin Gishu county in Western Kenya. She and a group of her fellow students have recently created a programme to raise awareness around rheumatic heart disease locally and to support the #TimeToTackleRHD campaign we ran in the lead up to the WHO Resolution on rheumatic fever and rheumatic heart disease.
We had the opportunity to meet Wesly Marcena in Geneva during his participation earlier this year in an NCD Alliance workshop ‘Our Views, Our Voices’, which aims to meaningfully involve people living with NCDs (non-communicable diseases) in the global response to these diseases. We discussed with Wesly his diagnosis, how he lives with and manages his RHD, and his hopes for the future. (Et disponible en français ici)
Ms Buli Wainiqolo has been a vocal advocate for rheumatic heart disease prevention and control efforts in her home country of Fiji and has used her her own experience as someone living with rheumatic heart disease to raise awareness about its prevention and control. Read more about her advocacy at home and on the global stage here and here.
Zandile and Felicia are both from the Western Cape, South Africa and have one thing in common: they both live with rheumatic heart disease (RHD). Both Felicia and Zandile’s experiences show that people can live with and manage RHD, but also demonstrate the dangers of not diagnosing and treating RHD early. You can read their important stories here.
Ilaitia Usa Tukana comes from Fiji in the Western Pacific. He grew up playing rugby in a family with two brothers and two sisters. At the age of 8 years old, Ilaitia was diagnosed with rheumatic heart disease (RHD). We recently spoke to Ilaitia about this diagnosis, and why he now advocates for greater awareness about the dangers of sore throat and RHD.
The "Listen to my Heart" Patient Awareness Event in Kampala, hosted by the Uganda Heart Institute (UHI) Rheumatic Heart Disease Support Group and RHD Action was held in November last year and attended by people living with rheumatic heart disease (PLWRHD), physicians, nurses and policy makers. The event was hosted to raise awareness among people living with rheumatic heart disease, giving them the opportunity to learn more about RHD and the services health care workers provide, and most importantly, the chance to meet and network with other PLWRHD from across the region. Read more about the event and the important role of the Uganda Heart Institute Support Group here.
Last year, RHD Action awarded a small grant to Dr Tangeni Auala for a project entitled, "Namibian RHD Ambassadors Program Pilot." The Namibian RHD Ambassador program is a patient-driven awareness campaign that aims to empower People Living with Rheumatic Heart Disease (PLWRHD) by educating them about their disease so that they, in turn, can utilise their knowledge and skills to educate their families and communities about Rheumatic Fever (RF)and Rheumatic Heart Disease (RHD). Find out more about their program here and follow their RHD Ambassadors on Facebook here.
This year for World Heart Day the World Heart Federation is asking people around the world to make a promise... for my heart, for your heart, for all our hearts. What will your promise be? Check out their awesome campaign video for World Heart Day 2018 below and find out more about you can get involved here.