Newly Diagnosed: Taking the First Step on Your Journey

Becoming educated is a good place to start on your journey with scleroderma. Whether you are a patient or a caregiver, knowing as much as possible about the disease will help you be a more active participant in your or your loved one’s healthcare. Learn more below about scleroderma, its causes, its symptoms, and how it’s diagnosed.


Scleroderma is a chronic disease that affects the skin and connective tissue, the tissue that supports and holds organs together, and is also found in the joints. The hallmark of scleroderma is thick and hardened skin caused by excessive production of collagen, a protein that is the main component of scar tissue. This scar tissue can accumulate in and damage organs.

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It is broadly separated into two major groups: localized scleroderma and systemic scleroderma. In localized scleroderma, usually only the skin and/or underlying muscle tissue is affected, whereas in systemic scleroderma, the disease also affects internal organs. Patients can have different symptoms and different combinations of the disease.

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Scleroderma is an autoimmune disease characterized by patches of scar-like thick skin caused by collagen buildup in the area between cells called the stroma. In scleroderma patients, the body keeps producing collagen as if there is a wound that constantly needs to be repaired. It appears to develop spontaneously, and its underlying causes are still unknown.

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Scleroderma symptoms can vary dramatically, depending on which organs are affected and how severely. For some patients, symptoms can be mild; for others, they can be life-threatening. Symptoms also differ depending on if the patient has localized or systemic scleroderma.

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There is no single test to diagnose scleroderma, and patients may have to undergo several tests to exclude other conditions before a conclusion is reached. Tests also may be carried out as part of the diagnosis to see which organs the disease has affected. Physical exams, biopsy, blood tests, and tests to evaluate organ function may be carried out in the diagnostic process.

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