Understanding Scleroderma and Systemic Sclerosis
Who’s at risk for scleroderma/systemic sclerosis?
Systemic sclerosis and scleroderma can affect people of all races and ethnic backgrounds, but it is more common in women. It most often begins between ages 30 and 60, although it can occur at any age.
What causes systemic sclerosis?
The exact cause of systemic sclerosis is not known. Researchers believe it develops when the immune system becomes overactive, injures small blood vessels, and triggers the body to make too much collagen and scar-like tissue, called fibrosis. This process can affect the skin including hardening of skin (scleroderma) and, in some people, internal organs such as the lungs, heart, kidneys, and digestive tract. Sometimes, the patients can have systemic sclerosis without skin changes
What are the symptoms of systemic sclerosis?
Symptoms of scleroderma and systemic sclerosis vary from person to person and may involve the skin, blood vessels, joints, digestive tract, lungs, heart, or kidneys. Common symptoms include Raynaud’s phenomenon, puffy or swollen fingers, thickening or hardening of the skin, fingertip ulcers or sores, joint pain or stiffness, heartburn or trouble swallowing, shortness of breath, cough, fatigue, itching and hair loss over skin changes.
How is systemic sclerosis diagnosed?
Systemic sclerosis is diagnosed by a rheumatologist based on symptoms, physical examination, blood tests, and evaluation for internal-organ involvement. Testing may include autoantibody blood tests, nailfold capillary examination, pulmonary function tests, chest imaging, echocardiogram, urine testing, kidney function tests, and assessment of the digestive tract when symptoms are present.
How is systemic sclerosis treated?
There is no single treatment for scleroderma and systemic sclerosis. Treatment is tailored to the person and may focus on circulation, skin and joint symptoms, reflux or swallowing problems, lung disease, pulmonary hypertension, kidney protection and fatigue. Regular screening helps detect complications early, when they are more treatable.
What else can you do to support systemic sclerosis care?
Healthy habits can support systemic sclerosis care. Stay active with gentle exercise and stretching, protect your hands and feet from cold, eat well, prioritize sleep, avoid smoking or vaping, prevent infections, keep regular follow-up visits and tell your care team about new shortness of breath, chest symptoms, reflux or swallowing problems, fingertip sores, or blood pressure changes.
This information has been reviewed and approved by Mehrnaz Maleki Fischbach, MD (June 2026).