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Global ARCH / Uncategorized  / Lavina Ndinangoye – Namibia Rheumatic & Congenital Hearts

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.

Global ARCH

Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).

 

Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.