Cape Town hosts 4th Annual Listen to My Heart Patient Event
The RHD community of researchers and health care workers at University of Cape Town under the banner of the Stop RHD ASAP program have created a tradition of patient events to include, recognize and celebrate the RHD patient community. Starting in 2014, the first patient event was a luncheon to show appreciation for study participation and to share preliminary results of the Global Rheumatic Heart Disease Registry (REMEDY) study prior to presentation at an international congress.
In 2015, the Stop RHD ASAP team, together with the Rheumatic Heart Disease, Evidence, Advocacy, Communication and Hope (RhEACH) team, added an educational demonstration component to empower the patient community with information about their disease and how to take better care of themselves. This new format also provided an opportunity for patients to interact directly with healthcare providers and researchers outside of the clinical environment.
Based on the success and enthusiasm generated at the 2015 event, Stop RHD ASAP together with RhEACH and other RHD Action partners were joined by UCT’s Dr Jantina DeVries, a recipient of NIH funding for a community engagement component, to hold the 2016 event. The event was held at the Cape Town International Convention Center and was facilitated by the incoming president of SA Heart and RHD Action’s Prof Liesl Zuhlke to take place within the South African Heart Association meeting. Having patients included in a medical congress was a first for the cardiology community in South Africa. This patient event was called “Listen to my Heart” and included international guests and patients for the first time. The newly formed Groote Schuur Hospital RHD Patient Community Advisory Group was also formally introduced at this event.
— Jessica Abrams (@capetownjess) October 3, 2017
This year, 47 People living with Rheumatic Heart Disease (PLWRHD) guests attended the 2017 event despite the grey weather that had settled over Cape Town. There were many familiar faces among the patient group this year, as well as some new faces. Notably in attendance was a new mother with RHD, whose pregnancy was successfully managed at the Groote Schuur Combined Cardio-Obstetric Clinic. She brought along her 7-month son, much to the delight of her fellow guests.
The event included informational booths displaying heart valves, echocardiography and the genetics of RHD. The program also included short presentations about the global epidemiology of RHD, the natural progression from strep throat to the valvular complications of RHD, as well as the management of RHD. A healthy eating demonstration was new to the program this year. along with the “I know my heart” quiz moderated by Professor Mark Engel based on the information and demonstrations from the entire morning.
This year, patients responded strongly to the auscultation demonstration with simple stethoscopes. Patient guests were enthralled, “listening to the hearts” of their fellow patients as well as to their own. The sound of hearts pumping with damaged valves, repaired valves and mechanical valves was plainly audible through the stethoscopes. Guests and event facilitators were clearly happy to share the sounds of their heartbeats with others.
Events to engage, celebrate and network with PLWRHD is clearly a valuable activity in the healthcare community. We encourage our readers to consider celebrating their own PLWRHD community around the world in an effort to bring the faces and voices of the real people affected by this disease to the attention of policy makers, funders and the medical community so they can make informed decisions on the importance of prevention at the primary, secondary and tertiary levels, and on how to care for PLWRHD who have progressed to advanced disease.