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RHD Action Participates in ‘Listen to my Heart’ Patient Event

29 September 2016
Attendees of the 'Listen to my Heart' event in Cape Town
RHD Action

On 9 September 2016, RHD Action was delighted to participate in ‘Listen to my Heart’: an event for people living with RHD, held alongside the Congress of SA Heart and the World Congress of Cardiothoracic Surgeons in Cape Town, South Africa. 

Co-organized by RHD Action and the University of Cape Town, ‘Listen to my Heart’ gave RHD researchers, health workers and advocates an opportunity to connect with the RHD community’s most important stakeholders : people living with RHD.

Approximately 80 people living with RHD attended the event, travelling from the South African regions of Limpopo and the Western Cape, and Kampala, Uganda. All of these patients had participated in the REMEDY study, an international registry collating information on RHD from across the African region and beyond.

During the event, guests had the opportunity to take part in a wide range of activities. These included measuring their body mass index (BMI); receiving an echocardiographic screening; discussing barriers and opportunities to improving RHD care in South Africa and abroad; and taking group pictures in the photo booth.

All people living with RHD were asked to give their perspectives on how to improve RHD prevention, control and awareness. Attendees especially called for:

  • More information on RHD at the district level, especially on RHD and pregnancy;
  • Clearer explanations from doctors regarding their RHD diagnosis;
  • More RHD awareness-raising programmes in schools.

Event Speakers
Attendees also heard from a diverse array of speakers. In his opening remarks, Mr Simpiwe Nkepu from the University of Cape Town (UCT) praised the event’s vital role in raising awareness around RHD, stating that “there are patients who have had RHD for over 15 years and still don’t fully understand the symptoms.”

Professor Mark Engel of UCT particularly thanked the people living with RHD for attending and participating in the REMEDY study: “Today is your day […] you are contributing to a much bigger picture as we try to make a difference”.

Their presentations were followed by Professor Pamela Naidoo (CEO, Heart and Stroke Foundation of South Africa) and Belinda Ngongo (Medtronic Foundation), both of whom called for greater patient empowerment.

These calls were echoed by Olivia Matshabane from UCT, who introduced the members of the newly-formed Patient Community Advisory Group (PCAG). Noting that some members had been living with RHD for more than 50 years. Ms Matshabane described the role of the PCAG as connecting and communicating between researchers and the patient community.

Dr Liesl Zühlke (RHD Action) concluded the event by thanking the people living with RHD for attending and sharing their experiences.

Get in touch!
To build on the success of ‘Listen to my Heart’, RHD Action and its allies hope to host similar events in the future to further strengthen patient empowerment and advocacy.

Are you living with RHD? Tweet @RHDAction using the hashtag #ListenToMyHeart, to ensure that the patient voice is at the heart of our work.

#ListenToMyHeart   
@RHDAction  
info@rhdaction.org 
rhdaction.org

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