Living with Systemic sclerosis sine scleroderma
A type of scleroderma with Raynaud's and scarring in internal organs, but not the skin.
Understanding Systemic sclerosis sine scleroderma
People have Raynaud's phenomenon and a buildup of scar tissue (fibrosis) in one or more internal organs, such as the esophagus, heart, lungs, or kidneys. Organ involvement may show up as heartburn, trouble swallowing, high blood pressure, kidney problems, shortness of breath, or diarrhea. It usually begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fingers that change color in the cold (Raynaud's)
- Heartburn
- Trouble swallowing
- High blood pressure or kidney problems
- Shortness of breath
- Diarrhea or slowed gut movement
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
GARD says the exact cause is unknown.
Also known as: limited systemic sclerosis; ssc without skin involvement; systemic sclerosis without skin involvement; systemic sclerosis without skin thickening
Patient organizations
- Scleroderma Research FoundationSystemic sclerosis sine scleroderma · United States
- National Scleroderma FoundationSystemic sclerosis sine scleroderma · 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 sine scleroderma.
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