People Power series: Power dynamics and power reorientation towards individuals with lived experience – Anu Gomanju, Nepal

Anu was diagnosed with rheumatic heart disease in 2001 at the age of 11 after suffering rheumatic fever caused by repeated episodes of strep throat infection. Following surgery, she lived without major physical complications for 15 years. But in 2016, she suffered congestive heart failure resulting from damage to multiple heart valves. She underwent a second open heart surgery. Although the surgery was a success, she still suffers from an abnormal heart rhythm.

Born into a family of six in a small municipality near Kathmandu in Nepal, Anu’s parents worked hard to allow all four of their children to complete higher education. The family runs a small grocery shop in their village and rely largely on farming.

Through Anu’s experience with rheumatic heart disease and congestive heart failure in Nepal, we learn how shifting the power dynamic from her clinicians to herself eventually led to meaningful participation in her care alongside driving her future community advocacy efforts for others.

This article is an excerpt from the publication ‘People power - Perspectives from individuals with lived experience of noncommunicable diseases, mental health conditions and neurological conditions’, which includes six detailed case studies from 12 individuals with lived experience of diverse health conditions.

The case studies were developed using participatory research through focus groups with people with lived experience of NCDs, mental health conditions and neurological conditions.