A Life-Changing Diagnosis

In April 2019, a routine check-up turned my world upside down. My doctor delivered shocking news: "There are several small nodules in your lungs. We need a CT scan—this could be serious." Fear flooded my mind as I sought answers from a lung specialist. After numerous invasive tests, I received a diagnosis that was both foreign and alarming: sarcoidosis.

Understanding Sarcoidosis: What It Is and Who It Affects

Sarcoidosis is an inflammatory disease characterized by an overactive immune response, creating clusters of inflamed tissue known as granulomas. These can form in various organs including the lungs, skin, eyes, and heart. The complexities of this condition make it daunting; some feel barely affected while others, like myself, face ongoing physical and emotional hurdles.

Unraveling the Causes and Challenges of Diagnosis

Despite years of research, the exact cause of sarcoidosis remains elusive. However, studies suggest genetic and environmental factors may play a role. With little awareness of this condition in Nepal—where I found only five small-scale studies—diagnosis can be convoluted. Sarcoidosis is often misidentified as tuberculosis due to similar symptoms, complicating the process of getting proper care.

The Daily Struggle: Symptoms and Their Impact

Living with sarcoidosis means grappling with symptoms that vary by individual and organ affected. While I often experience breathlessness and fatigue, others may suffer from skin lesions or joint pain. After moving to Georgia for work, I faced more severe symptoms, including tightness in the chest and debilitating fatigue. It’s a constant battle, where the severity of symptoms shifts with the seasons.

Intense Treatment and Its Emotional Toll

In the spring of 2023, upon returning to Nepal, my condition worsened, prompting urgent treatment recommendations. While some patients can avoid therapy, my situation required corticosteroids to combat the widespread inflammation. Although effective, the thought of side effects like weight gain and mood swings made the decision daunting. Yet, the dire risk of lung scarring outweighed my fears.

Life in a Pollution-Ridden City: The Added Challenge

Residing in Kathmandu introduces yet another hurdle. The city’s air quality significantly aggravates my respiratory symptoms. As someone who enjoys jogging—a key to enhancing my lung capacity—I often find myself limited in outdoor activities due to pollution. Research indicates that air quality can trigger inflammatory responses in those with sarcoidosis.

A Call for Improved Healthcare in Nepal

The unpredictability of sarcoidosis necessitates vigilant management and support. Accurate prevalence data in Nepal is scarce, often overshadowed by misdiagnosis. There's a pressing need for better healthcare coordination and education for medical professionals, as the symptoms often overlap with those of more common diseases like tuberculosis.

Embracing Empathy and Support

While my struggle with sarcoidosis is deeply personal, it signifies a broader public health challenge in Nepal. Increased awareness and open discussions about health can transform conversations into opportunities for education and connection. Ultimately, navigating the invisible battles of chronic illnesses requires not just medical treatment, but also understanding and community support.