Living with Limited cutaneous systemic sclerosis
A form of systemic sclerosis with skin thickening on the hands, face, feet, and forearms, and Raynaud's phenomenon.
Understanding Limited cutaneous systemic sclerosis
It usually begins in adulthood. It likely starts with an autoimmune reaction that leads to too much collagen. In some cases it is linked to exposure to certain chemicals.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Raynaud's phenomenon
- Skin thickening on hands, face, feet, and forearms
- Skin ulcers (open sores)
- Acid reflux
- Nausea and vomiting
- Small visible blood vessels on the mouth lining (telangiectasia)
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
Autoimmune Association, Scleroderma Research Foundation and National Scleroderma 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: Autoimmune Association, Scleroderma Research Foundation, National Scleroderma 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 Autoimmune Association 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 exact cause is unknown. It likely starts with an autoimmune reaction that leads to too much collagen, and sometimes it is linked to certain chemicals.
Also known as: limited cutaneous systemic scleroderma; limited scleroderma; limited systemic sclerosis; systemic sclerosis, limited
Patient organizations
- Autoimmune AssociationLimited cutaneous systemic sclerosis · United States
- Scleroderma Research FoundationLimited cutaneous systemic sclerosis · United States
- National Scleroderma FoundationLimited cutaneous systemic 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 Limited cutaneous systemic sclerosis.
Explore research for Limited cutaneous systemic sclerosis
Explore actively recruiting Limited cutaneous systemic sclerosis studies with HealthSpark.
Find actively recruiting studies for Limited cutaneous 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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