When I was in third grade, my life took a sudden and unexpected turn. My family and I traveled to India because my grandmother had passed away. She had been battling a disease I couldn’t even pronounce at the time—scleroderma. I didn’t fully understand it then, but I knew it had slowly taken her life, bit by bit.
I remember sitting in a cramped hospital room during one of our visits to see her. The air smelled like disinfectant, and the walls were an uninviting pale yellow. My grandmother, who had once been full of energy and laughter, lay in bed, frail and exhausted. Her fingers were curled tightly—almost claw-like—because of the stiffness in her skin. She struggled to breathe, her voice reduced to barely a whisper.
The doctors spoke softly to my parents, their words heavy with resignation. I didn’t catch much of what they said, but I caught enough: “There’s no cure.” Those three words haunted me. How could there be no cure? How could the doctors, with all their knowledge, not save her?
In India, the hospitals were starkly different from what I had seen in the U.S. Resources were limited, and specialists for rare diseases like scleroderma were hard to find. My parents spoke of how frustrating it was to navigate a system where answers were scarce and options even scarcer. Watching my grandmother slowly lose her battle shaped me in ways I didn’t understand at the time.
That trip planted the first seeds of my interest in medicine. It made me wonder: How many other families are out there, hearing the same devastating words—“no cure”? It wasn’t until years later that I began researching scleroderma, uncovering the complexity of the disease that had claimed my grandmother.
What is Scleroderma?
Scleroderma is a rare autoimmune disease that causes the immune system to attack the body’s tissues, leading to the overproduction of collagen. Collagen, a protein essential for connective tissues, builds up in the skin and organs, causing them to harden and scar.
There are two main types of scleroderma:
Localized Scleroderma: This form affects only the skin and sometimes underlying tissues. It is more common in children and can lead to patches of thickened, discolored skin.
Systemic Scleroderma (Systemic Sclerosis): This more severe form can affect multiple organs, including the lungs, heart, kidneys, and gastrointestinal system. It is further divided into:
Limited Cutaneous Systemic Sclerosis, which progresses slowly and primarily affects the hands, face, and feet.
Diffuse Cutaneous Systemic Sclerosis, which can cause rapid and widespread organ damage.
Symptoms and Impact
Scleroderma symptoms vary widely but often include:
Skin Changes: Tight, thickened, or hardened skin, especially on the fingers and face.
Raynaud’s Phenomenon: Blood vessel constriction in response to cold, turning fingers or toes white or blue.
Joint Pain: Stiffness and pain from scar tissue around joints.
Lung and Heart Issues: Pulmonary fibrosis, pulmonary hypertension, arrhythmias, and heart failure are possible.
Digestive Problems: Acid reflux, difficulty swallowing, and malabsorption.
Kidney Involvement: Severe cases can lead to kidney failure.
For my grandmother, these symptoms weren’t just medical terms—they were daily struggles. She couldn’t eat without pain, struggled to move her stiff fingers, and eventually lost the ability to walk without assistance.
Diagnosis and Treatment
Scleroderma is notoriously difficult to diagnose because its symptoms overlap with many other conditions. Doctors use a combination of clinical evaluation, blood tests for specific antibodies, imaging studies, and sometimes a skin biopsy.
Treatment focuses on managing symptoms and slowing progression:
Medications: Immunosuppressants, corticosteroids, and proton pump inhibitors for symptom relief.
Physical Therapy: To maintain joint flexibility and mobility.
Organ-Specific Care: Treatments for affected organs, such as lung therapies or blood pressure control.
While these treatments can improve quality of life, there is still no cure—a reality that my family came to understand all too well.
Moving Forward
My grandmother’s experience with scleroderma taught me more than just the harsh realities of rare diseases. It gave me a sense of purpose. Today, as I explore medicine and science, I carry her story with me. It’s why I teach young kids through my nonprofit and why I’m drawn to the medical and anthropology fields. I want to contribute to research that could bring hope to patients and families like mine.
Scleroderma isn’t just a medical condition—it’s a deeply personal reminder of why advancing medicine matters. It’s about more than treatments; it’s about giving people a chance to live fully and without pain.
By increasing awareness and supporting ongoing research, we can take steps toward a future where no family has to hear the words “there’s no cure.” My grandmother may no longer be here, but her story lives on in my journey—and in my hope for a world where rare diseases like scleroderma no longer steal lives too soon.
