A patient-first guide to understanding scleroderma, recognizing symptoms, navigating diagnosis, and managing life with a complex connective tissue autoimmune disease. Designed to support — not replace — conversations with your healthcare team.
Scleroderma is a rare autoimmune rheumatologic disease that causes inflammation and excessive collagen production, leading to thickening and hardening of the skin and connective tissues. In more serious cases, the disease may affect internal organs including the lungs, heart, kidneys, digestive system, and blood vessels.
Approximately 300,000 Americans are living with scleroderma. About 80% of diagnosed patients are women. Most diagnoses occur between ages 25–55. About 1 in 3 patients develop systemic disease.
African American patients may experience earlier onset, more diffuse disease, and higher rates of organ involvement. Disease progression can differ significantly between individuals and populations.
Environmental exposures including silica dust, solvents, welding fumes, paint thinners, coal dust, and certain chemotherapy drugs may increase risk. Family history of autoimmune disease may also increase susceptibility.
Many patients report years of diagnostic delay because symptoms overlap with multiple autoimmune diseases and can change significantly over time.
Seek immediate medical care for severe shortness of breath, chest pain, stroke-like symptoms, confusion, severe hypertension, rapidly worsening breathing problems, or symptoms of kidney crisis.
Lung involvement may cause shortness of breath, chronic cough, or reduced exercise tolerance. GI involvement may include reflux, swallowing difficulty, bloating, constipation, or bowel dysmotility. Kidney involvement may lead to dangerously elevated blood pressure or kidney crisis. Heart involvement may contribute to arrhythmias or heart failure.
Disease progression varies dramatically between individuals and may range from slowly progressive to rapidly aggressive systemic disease.
Symptoms may appear gradually and affect different organ systems at different times.
Scleroderma diagnosis is often complex because symptoms overlap with other connective tissue and autoimmune diseases.
There is currently no cure for scleroderma, but treatment focuses on slowing progression, protecting organs, managing symptoms, and improving quality of life.
Physical therapy, hand exercises, adaptive tools, nutrition support, fatigue management, and smoking cessation may all support disease management.
Living with scleroderma often requires balancing energy, mobility, symptom management, and emotional wellbeing.
Protect hands and feet from cold exposure, use warming techniques, and monitor circulation changes.
Small meals, elevated sleeping positions, and avoiding trigger foods may reduce reflux symptoms.
Many patients benefit from pacing activities, rest periods, and adaptive planning around fatigue.
Patients may qualify for workplace accommodations under the Americans with Disabilities Act (ADA).
Chronic autoimmune disease can significantly affect identity, independence, relationships, emotional wellbeing, and mental health.
Mental health symptoms are a valid and important part of autoimmune disease care.
Therapy, peer support groups, chronic illness counseling, and community connection can reduce isolation and improve coping.
Rate each symptom from 1 (mild) to 5 (severe). Bring this filled out to your appointments — it helps your provider see patterns and adjust your care.
This guide is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance specific to your situation.
