Living with Systemic sclerosis
An autoimmune condition (systemic scleroderma) that thickens the skin and can scar internal organs.
Understanding Systemic sclerosis
Too much collagen builds up as scar tissue (fibrosis) in the skin and other organs. It often begins with Raynaud's phenomenon, in which fingers change color in the cold. Hands may then swell before the skin becomes thick and hard. Fibrosis can also affect the esophagus, heart, lungs, and kidneys. It usually begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fingers that change color in the cold (Raynaud's)
- Puffy hands and thick, hard skin
- Finger ulcers and pitted scars
- Joint pain and swelling
- Muscle aches and weakness
- Heartburn and lung or kidney changes
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, heart and blood vessel specialists, kidney specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Scleroderma Research Foundation, National Scleroderma Foundation and Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Heart and blood vessel specialists (cardiologists); Kidney specialists (nephrologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Scleroderma Research Foundation, National Scleroderma Foundation, Children's Cardiomyopathy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Scleroderma Research Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The scarring is caused by the body making too much collagen. It is an autoimmune condition, and GARD doesn't describe a cause for it yet.
Also known as: diffuse scleroderma; diffuse sclerosis; progressive systemic sclerosis; pss (progressive systemic sclerosis); scleroderma (& [systemic sclerosis]); scleroderma syndrome
Patient organizations
- Scleroderma Research FoundationSystemic sclerosis · United States
- National Scleroderma FoundationSystemic sclerosis · United States
- Global Fibrosis FoundationSystemic sclerosis · United States
- The International Foundation for Autoimmune & Autoinflammatory ArthritisSystemic sclerosis · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Systemic sclerosis.
Explore research for Systemic sclerosis
Explore actively recruiting Systemic sclerosis studies with HealthSpark.
Find actively recruiting studies for Systemic sclerosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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