Living with Diffuse cutaneous systemic sclerosis
A type of scleroderma with skin hardening and problems in many organs, usually starting in adulthood.
Understanding Diffuse cutaneous systemic sclerosis
Skin hardening starts on the fingers and face and quickly spreads. Other symptoms include Raynaud's phenomenon, small red spider veins, acid reflux, trouble swallowing, joint and muscle pain, and dry mouth. More serious problems can involve the lungs and kidneys. GARD lists onset in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hardening of the skin
- Raynaud's phenomenon
- Acid reflux
- Joint pain and arthritis
- Dry mouth and dental cavities
- Shortness of breath
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
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: 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 National Scleroderma 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 of the condition is unknown.
Also known as: diffuse cutaneous systemic scleroderma; dssc; progressive cutaneous systemic scleroderma; progressive cutaneous systemic sclerosis
Patient organizations
- National Scleroderma FoundationDiffuse 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 Diffuse cutaneous systemic sclerosis.
Explore research for Diffuse cutaneous systemic sclerosis
Explore actively recruiting Diffuse cutaneous systemic sclerosis studies with HealthSpark.
Find actively recruiting studies for Diffuse 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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