Anu Gomanju

Anu Gomanju is a patient advocate for ending Rheumatic Heart Disease (RHD) which affects 40 million people worldwide and claims more than 300,000 lives every year. RHD accounts for nearly 2% of all deaths from cardiovascular disease and occurs most commonly in childhood. Anu shares her story in the hope of helping others and creating change.

I learned the hard way where the heart is located. And then I came to know it well since it was the source of health problems from childhood that would continue to impact my life.

My earliest symptoms were fever, tonsillitis, and aching hands and feet, especially in the joints. My parents were at a loss to know what was happening to their youngest child. Confused and wanting answers, I began to experience low self-esteem and cried easily. I was often sick and missed many classes, ultimately unable to turn in a good final exam because I was in pain.

At first, we used herbal treatment before learning that antibiotics were necessary because I was experiencing Rheumatic Fever which can lead to Rheumatic Heart Disease (RHD). It starts with a bacterial infection and its symptoms can be missed for something less serious. By the time I was diagnosed, I was showing signs of malnourishment and was referred to a tertiary-level hospital and then to a surgery unit.

Surgery was my saviour but only part of the cure. It allowed me to resume my education and I decided on a career in public health. In adulthood, a second surgery became necessary. When my doctors said I needed heart valve replacement, I felt it would help to talk to others, especially women, living with the same disease before going ahead. I struggled to find information, turning to google searches and YouTube videos to explore others’ experiences and options but few reflected my reality and included mostly cases of heart valve recipients in wealthy countries.

Added to the health issues came the family financial crisis. Two major open-heart surgeries incurred high costs and bank loans left us in debt. Many other challenges ensued. For example, in Nepal, it is not uncommon to walk many hours or even a day or two to reach proper health services. Once at a health centre or clinic, treatment might not be available and the penicillin that is given to RHD patients is not widely available. I count myself relatively lucky because I can get to a hospital in less time than many patients further away.

Living with RHD is unique for every patient and at every life stage, with a toll beyond the physical. One feels personally and socially stigmatised. I recall my own struggles to overcome feelings of anxiety and trauma. Understanding RHD’s impacts and adhering to the treatment regimen is demanding, adding to the usual growing pains of childhood. The emotional impacts of adolescence can affect young people more acutely when they are faced with the thought of surgery and scarring which engenders issues around self-image. Often, adolescents’ self-confidence, coping skills, and social relationships are affected—none of this helped by poor academic performance due to illness. Adults deal with the physical pain as well as anxiety about health prospects, securing and maintaining employment, and having the costs of care covered.

My experience has made me an active advocate for cardiovascular health and support for patients living with noncommunicable diseases. Patients are at the heart of the journey towards an RHD-free future. We have experienced the cycles of illness and have much to contribute. I wish that every RHD patient, no matter where they are in the world, can get early diagnosis, prevention, and treatment. Policymakers, not just in health, but all other sectors that have a bearing on health outcomes must partner to end RHD and ensure cardiovascular health for all.

Anu Gomanju is a patient advocate for ending Rheumatic Heart Disease (RHD) as well as a person living with RHD. She is affiliated with the NCDI Poverty Network and the Kathmandu Institute of Child Health (KIOCH) as the Voices of NCDI Poverty Fellow. Anu is also involved with global health actors such as WHO, WHF, and alliances of patient and family organizations such as the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) and the Global Heart Hub (GHH), representing Nepal and Asia. She is a trained global public health professional. Her latest projects include “Connecting Hearts to End Heartbreak (CHEER Hearts)” and the creation of an RHD patient group.