Navigating Scleroderma: A Personal Path to Medicine and Awareness

Why I’m Passionate About Raising Awareness of Scleroderma

My connection to scleroderma first began when my grandmother, who lived in India, passed away from the disease while I was in third grade. She was diagnosed in the late 1900s, a time when there was little awareness or understanding of scleroderma, and even fewer treatment options, especially in India. The limited resources and knowledge available back then meant that managing her symptoms was incredibly challenging, and her struggle left a lasting impact on our family. Losing her to an illness I didn’t fully understand shaped my perspective and sparked a desire to know more about the condition that impacted her life. As I’ve learned about what she endured, I’ve come to appreciate the courage required to face such a complex illness. Witnessing my family’s struggles as they coped with her condition instilled in me a profound empathy and a sense of purpose that has drawn me toward a career in medicine. I hope to one-day support patients and families through the difficult journey of facing chronic illnesses, helping them navigate the physical and emotional challenges with compassion and care.

Understanding Scleroderma

Scleroderma is a rare, chronic autoimmune disease in which the body’s immune system mistakenly attacks its own tissues, leading to an overproduction of collagen, the protein responsible for maintaining skin and connective tissue. This excess collagen hardens and thickens tissues, causing visible changes in the skin and affecting joints and muscles. While some people experience symptoms only on their skin, others may face complications where vital organs—such as the lungs, heart, kidneys, and gastrointestinal tract—are affected. This disease can be unpredictable, with symptoms that vary from person to person. Some may have mild discomfort and joint pain, while others endure deep challenges, including difficulty breathing, kidney failure, and debilitating pain. Although no cure exists, advances in treatment can help manage symptoms and improve quality of life. By increasing awareness, we can support more research and foster a deeper understanding. Throughout this blog series, I will dive deeper into scleroderma and its connection with medical anthropology, specifically how this one disease is shown and treated differently across cultures.