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Systemic Sclerosis

Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune condition that results in the thickening and hardening of the skin and internal organs.

Calcinosis (calcium deposits under the skin)

Digestive tract issues (heartburn, dysphagia, acid reflux)

Fatigue

Heart problems (chest pain, abnormal heartbeats)

Joint pain, stiffness, swelling, and loss of mobility

Kidney problems (high blood pressure, kidney failure)

Raynaud's phenomenon (fingers/toes turning white or blue in response to cold or stress)

Skin thickening and tightening

Lung issues (shortness of breath, coughing, lung thickening)

Types of Systemic Sclerosis

Systemic sclerosis (SSc) is typically classified as limited or diffuse, based on the extent of skin involvement.

  • Diffuse cutaneous systemic sclerosis (dcSSc) - In diffuse systemic sclerosis, skin thickening progresses more quickly and affects a larger area compared to limited disease. Additionally, individuals with this form have a greater risk of experiencing sclerosis (hardening or thickening) of tissues or organs.
  • Limited scleroderma (CREST Syndrome) - In limited scleroderma, skin thickening is more localized, usually affecting the fingers, hands, and face, and progresses gradually over time. "CREST" is an acronym that highlights the key symptoms of this condition.
    • Calcinosis: Calcium deposits under the skin
    • Raynaud's phenomenon: Fingers/toes turning white or blue in response to cold or stress
    • Esophageal dysmotility: Difficulty swallowing
    • Sclerodactyly: Skin tightening
    • Telangiectasia: Tiny, dilated blood vessels on the skin

Learn more about how people who are experiencing signs and symptoms of systemic sclerosis can be diagnosed.

  • Since there is no test for SSc, the doctor reviews the patient's full medical history and performs a thorough examination to make a diagnosis.
  • Doctors may diagnose SSc when patients exhibit a range of symptoms that may seem unrelated, including Raynaud’s phenomenon, skin thickening, joint and muscle pain, morning stiffness, swollen or reddened hands, and persistent fatigue.
  • One common test is the antinuclear antibody (ANA) test, which detects specific blood proteins. Additionally, doctors may conduct tests to assess lung function, heart muscle changes, X-rays, and motility studies to further evaluate the condition.

There are treatments available that may help alleviate symptoms in patients and improve quality of life.

  • Skin Treatments: People may need specialized moisturizers and creams to keep the skin from drying out.
  • Immunosuppressants: People with SSc may be prescribed immunosuppressants to help regulate the immune system and prevent it from attacking healthy cells and tissues.  
  • Medications: People may be prescribed various medications to address the different complications of SSc, including issues with blood pressure, heart, lungs, kidneys, gastrointestinal system, and more.
  • Pain medications: Pain medications may be prescribed to help manage the pain associated with SSc.  
  • Light Therapy (Phototherapy): This therapy uses bright UV light to help treat thickened skin.
  • Physical/Occupational Therapy: Physical and/or occupational therapy can help individuals enhance their strength and mobility, while also supporting their independence in daily tasks.  
  • Stem Cell Transplants: People with more severe symptoms may require a stem cell transplant to replace damaged blood cells with healthy donor cells.

Ongoing Research

Systemic sclerosis is a rare disease that requires more effective treatment options. To find these new treatments for SSc, further research is necessary.

Current Research Studies

There are over 170 systemic sclerosis research studies that are actively recruiting participants. Visit ClinicalTrials.gov to find SSc research studies near you.

Featured Study

Resources

Find an online community of fellow patients, caregivers, and advocates below as
as well as some other general resources!

Scleroderma (The Original)
A Facebook group focused on providing support and assistance to individuals living with scleroderma.
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Living Better with Scleroderma
A community of individuals affected by scleroderma, coming together to share tips for living better with the condition and support each other through discussion.
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Systemic Sclerosis/Scleroderma
A group for seeking information about one's scleroderma journey and connecting with others who have similar experiences.
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r/Scleroderma
A Reddit community for sharing experiences and offering support to those affected by scleroderma.
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National Scleroderma Foundation
The mission of the National Scleroderma Foundation is to advance medical research, raise awareness about the disease, and offer support and education to individuals with scleroderma, along with their families and support networks.
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Scleroderma Research Foundation
The Scleroderma Research Foundation (SRF) is dedicated to funding and supporting high-quality research focused on developing better treatments and finding a cure for scleroderma.
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World Scleroderma Foundation
The World Scleroderma Foundation is a non-profit organization that advocates for scleroderma research and provides support to individuals affected by the condition.
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Scleroderma Education Podcast
Hosted by a UBC medical student, this podcast aims to help listeners learn about the various aspects of scleroderma from both patient and healthcare provider perspectives.
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Mobil’s Mobcast – A Scleroderma Chat
This podcast is designed for those affected by scleroderma, as well as for their families and friends, offering expert insights on scleroderma and related autoimmune topics.
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Guide for New and Future Patients
The Scleroderma Education Project developed this guide for new and prospective scleroderma patients, offering essential information about the condition, navigating the diagnosis process, preparing for doctor’s appointments, understanding baseline and routine testing, exploring treatment options, and providing helpful tips for family and friends.
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Psychological Impact of Scleroderma
Visit this website for information on the psychological impact of scleroderma, along with tips for managing and seeking support for mental health.
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Scleroderma Disability Benefits
Check out this website for more information on disability benefits for individuals with scleroderma.
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CAR T Therapy for Autoimmune Disease Exploded in 2024
Read the article to learn about Car T therapy for autoimmune diseases, including systemic sclerosis.
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Phase 2 Trial Tests Tibulizumab in Adults with Diffuse SSc
Visit this website to learn more about a Phase 2 trial for the study drug tibulizumab, aimed for people living with diffuse systemic sclerosis.
Learn More

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