On the 6th of August 2015 approximately 250 patients at Groote Schuur Hospital (GSH) being treated for Rheumatic Heart Disease (RHD), a disease that affects the valves of the heart, attended the annual Wellness Fair.  These GSH patients are among over 3000 participants in a two-year study of the disease from sites in Africa, India and Yemen.

“In recognition of the valuable contribution made by our participants over the years the occasion is a patient-centred event to raise awareness amongst the patient community, specifically highlighting the importance of the disease and the need for adherence to secondary prophylaxis and follow-up,” said Professor Bongani Mayosi.

The Global Rheumatic Heart Disease registry (REMEDY) study, designed to follow RHD patients from developing countries over two years, aims to do a comprehensive evaluation and follow-up of both the disease and treatment patterns among RHD patients. REMEDY is the first large-scale prospective study to characterise these patterns.

The study is part of the Awareness Surveillance Advocacy and Prevention Programme (A.S.A.P) under the leadership of Prof Bongani Mayosi, Head of the Department of Medicine at Groote Schuur Hospital (GSH) and the University of Cape (UCT). “The main purpose of  ASAP is to reduce the incidence of acute rheumatic fever and prevalence of rheumatic heart disease, with a view to the eventual eradication of this post-streptococcal disease in poor communities of South Africa,” says Prof. Mayosi.  A patient with Rheumatic Heart Disease (RHD) has a cardiac condition where the valves of the heart, either leak or become stiff and closed, he explains. This can ultimately result in heart failure and the need for heart valve surgery.  In 0.3-3% of people, acute rheumatic fever will go on to cause permanent heart valve damage or RHD. 

Patients from Groote Schuur Hospital constitute the largest group in the REMEDY study and have provided critical information about patients, treatment and the disease. “Thus far, the major findings are that our patients are young, have severe disease with many having had surgery or interventions and, that mortality is higher than previously suggested,” says Prof Mayosi. 

A highlight of the event was the testimony of two patients who shared their experiences of living with RHD. The Heart and Stroke Foundation of South Africa conducted health checks for the patients and various booths displayed information raising awareness of RHD.