Scleroderma
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What is Scleroderma?
Scleroderma is a rare autoimmune disease that causes the skin and other tissues to thicken and harden. It happens when the immune system triggers the body to produce too much collagen.
Scleroderma can affect only the skin or involve other parts of the body, including the blood vessels, joints, digestive system, lungs, heart, and kidneys. It is more common in women, and how it progresses can vary widely from person to person.
There are two main types:
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Localized scleroderma affects the skin and tissues beneath it.
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Systemic sclerosis can affect the skin, blood vessels, and internal organs.
What Are the Symptoms of Scleroderma?
Symptoms depend on which parts of the body are affected. Common symptoms can include:
- Thickening, tightening, or hardening of the skin
- Swelling or stiffness in the hands and fingers
- Raynaud’s phenomenon, which causes fingers or toes to change color or become numb in response to cold or stress
- Joint or muscle pain and stiffness
- Heartburn, reflux, or other digestive symptoms
- Shortness of breath or other lung symptoms
How Is Scleroderma Diagnosed?
Scleroderma looks different in different people. One our experienced rheumatologists will make the diagnosis after a comprehensive evaluation. Your evaluation may include a medical history, physical exam, blood tests, and additional testing based on your symptoms.
Your care team may order the following tests:
- Blood and urine tests to look for signs of scleroderma and check kidney function
- Pulmonary function tests to measure how well your lungs are working
- CT imaging to look for changes in the lungs
- Electrocardiogram (ECG) to check your heart’s electrical activity
Treatments for Scleroderma
There is no cure for scleroderma. Unlike other autoimmune diseases where one type of medication controls many of the symptoms, medications for scleroderma target specific symptoms or specific organs.
University of Rochester Medicine’s scleroderma specialists have deep experience managing the complex complications of this condition. Our rheumatologists work closely with experts in pulmonology, dermatology, cardiology, gastroenterology, vascular medicine, and hand surgery to build a treatment plan around each patient’s needs.
Treatment may include a mix of medications and lifestyle adjustments:
- Immunosuppressive medications for certain skin, lung, or muscle complications
- Medications that improve blood flow for Raynaud’s phenomenon or pulmonary hypertension
- Medications for digestive symptoms, including acid reflux, diarrhea, or constipation
- ACE inhibitors, a type of blood pressure medication that may be used when scleroderma affects the kidneys
- Physical and occupational therapy to maintain movement, improve function, and address muscle weakness
- Nutrition changes such as avoiding foods that worsen reflux, not eating close to bedtime, or eating smaller meals when digestive symptoms are a concern
- Keeping your body, fingers, and toes warm, to help reduce symptoms of Raynaud’s
- Smoking cessation, as smoking can worsen scleroderma symptoms, particularly when the lungs are affected
What Sets Us Apart?
URochester Medicine is home to the only program of its kind in Western New York dedicated to advancing the understanding and treatment of scleroderma. Our specialists care for people with scleroderma while actively studying the disease through clinical trials, observational research, and laboratory studies.
Through our partnership with the National Scleroderma Foundation and local patient support groups, we provide community education on scleroderma and related disorders. We also educate medical students, residents, and fellows through formal didactics and clinical training.
The connection between research, education, and patient care gives our multidisciplinary team deep expertise in this complex condition and keeps us closely connected to emerging approaches to treatment.
Learn more about our Scleroderma Program
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View All LocationsWe serve you in the Rochester metropolitan area and surrounding region. Locations are ordered by distance, with those closest to listed first.
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Clinical Trials
Our scleroderma team participates in clinical trials studying promising new treatments and approaches to care. If you’re interested in taking part, email our research team to learn about current studies, what participation involves, and whether you may be eligible.
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