Lavina Ndinangoye – Namibia Rheumatic & Congenital Hearts
This profile is part of the Global ARCH Storytelling Series to celebrate our members, their personal stories, and the work they do to help others.
My work as a Chief Correctional Officer in the health care division of the Namibian Correctional Service’s facility involves serving as an enrolled nurse and midwife. I provide health care services to the inmates at the Oluno Correctional Facility. I am also currently pursuing my Bachelor of Nursing Science Clinical honors with the University of Namibia. I am a mother of two and a worshiper (singer/artist). For several years I ran a campaign called RHD is Not a Disability and am now running the support group Namibia Rheumatic and Congenital Hearts and am involved with Brave Little Hearts Namibia. Other than that, I enjoy cooking and baking.
Lost to care and impact on my education
I was diagnosed with rheumatic heart disease at age 9 but got lost to care because of lack of proper information about the diagnosis. I eventually returned after several months of illness. Since I lived deep in the village, access to health care services was quite challenging. I lived in isolation for quite a long time due to the fear of stigma and being victimized. As a result, I abandoned my treatment and follow-up during my 1st year of my nursing certificate study and only returned when I had severe symptoms. As a result, I had to extend my studies by several months.
Lack of knowledge among healthcare workers and long distance to health care complicate my life
My mitral valve was repaired in 2010 in the Republic of South Africa and I am still doing well with my routine follow up. However, with my mitral valve repaired, my aortic valve started leaking in 2019. Currently I have mitral regurgitation, mitral stenosis, and aortic regurgitation. Despite that, I am grateful because I have access to specialized health care even if it is about 700km away from my home. The challenge I face most often is the stigma around receiving monthly benzathine penicillin (prophylaxis). I have learned that most health care workers, especially nurses, have no knowledge of rheumatic fever or rheumatic heart disease and the need for lifelong care, and that is the reason for the stigma.
I hope that training on rheumatic fever and rheumatic heart disease among health care providers improves so that it is as well recognized and treated as other health conditions. I also hope that we can get better information materials for community members and health workers, in different languages, in our healthcare facilities.