Stories of the sufferers: Battling with Heart Disease in Nepal’s Healthcare System

Jigyasa Regmi
Dr. Jigyasa Regmi is currently pursuing her DM in Cardiology at Dhulikhel Hospital, Kathmandu University . She completed her schooling at Budhanilkantha School, Kathmandu, followed by her MBBS from Manipal College of Medical Sciences, Pokhara, and her MD in Internal Medicine from DY Patil Medical College, Mumbai, India. Dr. Regmi has a keen interest in Rheumatic Heart Disease (RHD) and has been actively involved in school-based RHD screening programs. She has authored several articles in both national and international journals. In this article, she shares her experiences from her work in the screening and management of Rheumatic heart disease.

Misdiagnosed for Years
A middle-aged woman from a rural village of Sindhupalchowk arrived at the cardiology OPD of Dhulikhel Hospital, her eyes tired yet hopeful. For four long years, she was suffering with breathlessness that made even a short walk feel like climbing a mountain. Her local health post visits had become routine, each time met with the same diagnosis — a chronic obstructive airway disease. She was prescribed nebulizers and sent home with rotahalers, which she has been using diligently for the past three years, almost with the devotion of a religious ritual.

Despite her compliance sticking to all the prescribed medications, her condition worsened day by day until she was unable to sleep lying down. She decided to undertake a bumpy four-hour journey to Dhulikhel — her last resort.

When she arrived at our hospital, she was visibly distressed. Her face was filled with fatigue and fear. She recited her story with watery eyes. As she hinted me with cardiac symptoms, I gently auscultated her chest. To my surprise, I heard a murmur which was roaring so loud. I quickly screened her heart with echocardiography. Yes, it was a severe valvular heart disease as I had suspected, not a lung disorder as she had been led to believe.

Her story was not just a case—it was a reminder of how easily a diagnosis could have been made if her heart was auscultated by health personnel in her local health post.

A Murmur in the Playground
It was the year 2018, when we traveled to Jajarkot for a Rheumatic heart disease screening program in school children. In a large school ground, children laughing and lining up for checkups—I noticed a small boy, around seven years old, beaming with joy as he ran around with his friends. His smile was infectious, full of innocence and energy.

As he approached me, I placed my stethoscope on his chest—and despite the surrounding noise, a loud murmur cut through it all. It was unmistakable. Startled, I gently asked about his past health, and someone mentioned a repeated sore throat he had for the last three years. It had never been treated. No antibiotics. No follow-up. It had simply been forgotten.
Now, here he was, a little boy carrying the silent burden of rheumatic heart disease—at just seven years old. It was preventable if it was diagnosed on time. Such tragic moment, my chest felt heavy. I held back my emotions.

Too Late for Prevention
Similar but yet a different story. It was in the year 2022, I was taking morning rounds at Birendra Sainik Hospital, Chauni. My eyes met a woman, a mother of a serving army. She sat quietly in the corner of the ward, her hands folded tightly on her lap, tears silently streaming down her face. Her son stood beside her, his uniform pressed and neat, but his eyes filled with helplessness.
She had been diagnosed with severe valvular heart disease—far too late. The damage was done. Surgery was the only option now—a valve replacement. What struck me the most was not the severity of her condition, but how long she had waited before seeking help. The treatment, including surgery, was entirely free. Yet she had endured her symptoms in silence, ignoring the early warning signs until they began to interfere with her daily life.

A Preventable Tragedy, Still Unfolding
People wait, they minimize their pain, carry on with their lives, and only come to us when they can no longer walk, or sleep at night gasping for breath. In her case, that delay nearly cost her life. I was reminded once again how severe the lapses in awareness can be, even when care is just within reach.
These are just a few stories—glimpses into the lives of countless individuals across Nepal. Behind each face is a journey marked by silent suffering, unawareness, carelessness, delayed diagnosis or missed diagnosis.
In a country where access to healthcare can be limited and awareness even more so, many people don’t seek medical attention until their condition interferes with the most basic parts of life—breathing, walking, eating, sleeping. By then, the disease has often advanced beyond simple treatment.
RHD mostly affects children living in poverty. According to Nepal Heart Foundation 1000 children die from RHD every year and 1500 are operated causing a huge social and financial burden to the country. Government of Nepal has not yet initiated programs to prevent this disease.

Despite all the challenges, there is a hope. Organizations like the Nepal Heart Foundation, along with dedicated health workers and international partners, are working tirelessly to change this reality. Screening programs, awareness campaigns, and community outreach efforts are growing. The goal is clear: to diagnose this disease as early as possible by raising awareness regarding the signs and symptoms that lead to this condition. Also, to initiate treatment before it progresses further and before it steals more lives.
A sore throat in children may appear simple, but it deserves careful attention and timely treatment. Joint pain, skin rash should never be overlooked. Early medical consultation is key to ensuring child’s health and preventing complications.

Rheumatic heart disease has become rare in many developed countries. It doesn’t still have to remain a pertinent danger in country like Nepal. With collective effort, we can envision a future where stories like these are no longer so common, and where this heart disease is finally eliminated from our country.

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