Please tell us about the RHD Support Group-Uganda Heart Institute
It was formed in 2015 by a group of patients diagnosed with RHD, and supported by doctors and nurses at Uganda Heart Institute (UHI) Mulago. It is composed of patients both that have undergone surgery and those that have not yet acquired it.
What is the mission of the organization?
The group was mainly formed to support people living with RHD and to fight RHD in Uganda through awareness programs, bringing hope to patients, caregivers, and the community.
Future goals are to:
Create other patient support groups in the satellite clinics established by UHI in Uganda in Gulu, Lira, Mbarara, and Entebbe
Create a strong platform for the existing RHD patients to provide peer-to-peer social and emotional support, and guidance for a healthy lifestyle
Raise a collective voice together with UHI Mulago to fight against RHD
What are some of the challenges you face?
Challenges include a lack of financial support to reach out to all our targeted community and to carry out our activities consistently. This has been addressed by soliciting funds from friends and support group members’ small contributions. Grant proposals have also been written to both local and international organisations for support, though this has not yet been a success.
Also, the RHD population is sparse and the use of local herbs is common, so we are addressing this by linking them to our community outreach to create more awareness about the disease, however so far this has only been done on a small scale.
What are you most proud of?
We are very proud about the group because it has given us extensive health knowledge so that we are familiar with RHD. The awareness part makes us proud. Letting children know about RHD is important. Some of us didn’t get the opportunity to listen to those messages while in school. and maybe life would be different if we had known.