About Scleroderma
If you or someone you love has received a diagnosis of scleroderma, you are not alone. Scleroderma affects individuals differently, but it is a treatable disease. Our goal is to help you get the information you need to make the best decisions, take control of your health and live life to the fullest.
Overview of Scleroderma
Here is an overview of scleroderma and how it affects the body. Remember that scleroderma affects everyone differently and that it is a treatable disease. Please check out our educational resources to learn more.
What is Scleroderma?
Scleroderma, or systemic sclerosis, is a chronic autoimmune disease, in which the body’s normal immune/defense system turns against itself. The word “scleroderma” means “hard skin.” Hardening of the skin is one of the most common and visible manifestations of the disease. Systemic sclerosis can involve most organs but frequently involves the lungs, heart, gastrointestinal system, tendons, and joints in addition to the skin and may be life-threatening. Scleroderma is not contagious, infectious, or cancerous.
How is scleroderma diagnosed?
The diagnosis of scleroderma requires a history and an examination by a knowledgeable physician and may require a rheumatologist, a dermatologist, and other specialists. A diagnosis will require blood tests and other specialized tests.
For more important definitions, medical terminology, and information on tests for scleroderma, click here
Who develops scleroderma?
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About 80% of people who have systemic sclerosis are women. It is estimated that about 300,000- 700,000 Americans have scleroderma. About 2.5 million persons worldwide have scleroderma. About one-third of those with scleroderma have the systemic form of scleroderma.
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Scleroderma occurs most frequently between the ages of 25 and 55 years, although it can begin at nearly any age.
To learn more about Pediatric Scleroderma and our Parents of Kids and Teens with Scleroderma Support Group, click here
What are the types of scleroderma?
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Localized scleroderma:
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Localized Scleroderma is the form of scleroderma in which skin changes are patchy and usually stay within the skin. Localized scleroderma does not involve the internal organs except perhaps the esophagus.
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Systemic scleroderma (systemic sclerosis):
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Systemic scleroderma or systemic sclerosis is the form of scleroderma that involves multiple body systems. Systemic sclerosis can involve the joints, skin, heart, lungs, gastrointestinal tract, kidneys, bladder, nerves, muscles, blood vessels, joints, etc. The end result of this form of scleroderma is hardening and fibrosis of the organs. There are 2 major recognized patterns of systemic sclerosis – diffuse or limited disease.
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Diffuse scleroderma:
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Skin thickening occurs rapidly and affects more skin than the limited form of the disease. Diffuse scleroderma patients have a higher risk of involving the internal organs than limited scleroderma patients.
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Limited scleroderma:
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​ Skin thickening is less widespread (face, distal arms, hands, legs, and feet). Although internal organs are involved, they are less frequent and tend to be less severe than diffuse scleroderma.
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How does scleroderma affect the body?
The symptoms of scleroderma vary greatly from person to person and most people with scleroderma do not develop all the symptoms and signs of the illness. Symptoms of scleroderma may be obvious, such as when the skin is involved, or may be invisible, such as when the lungs or other internal organs are involved.
Skin Involvement
Skin involvement is the most common and apparent symptom of scleroderma. It can involve the following:​
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Skin thickening:
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​Skin thickening refers to the inflammation and fibrosis of the skin that leads to the titular “hard skin” from which scleroderma gets its name.
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Ulcerations:
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​Ulcerations or Ulcers are the common skin sores in the systemic form of scleroderma. They may be slow or difficult to heal. They may develop on the knuckles, elbows, toes, or other sites.
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Telangiectasias:
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Telangiectasias are the small dilated blood vessels near the skin's surface, which become visible as small red spots. They are usually on the fingers, palms, face, and lips.
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Musculoskeletal System
For the musculoskeletal system, swelling or puffiness of the hands is a typical symptom of scleroderma and often occurs early in the disease. The skin of the fingers may appear and feel swollen and tight, so making a fist may be difficult. Additionally, there may be pain, swelling, or stiffness in the joints around the body, making everyday movement difficult.
Exercise is one of the greatest remedies for the musculoskeletal system for scleroderma patients. See how Yoga for Scleroderma can improve symptoms and learn about our Get Moving with Scleroderma Support Group
Heart Involvement
Heart Involvement is common with scleroderma patients. Scleroderma can cause an increase in blood pressure due to constricting blood vessels. This can lead to issues such as heart palpitations and fluid build up in the legs, feet, and sometimes around the heart itself. This phenomena occurs in up to 30 - 40% of patients, however heart involvement rarely causes severe symptoms.
Lung Involvement
Lung Involvement is one of the most common and most serious conditions affected by scleroderma. Both inflammation and fibrosis may affect any lung tissue which interferes with the transfer of oxygen from the air into the blood vessels. Scleroderma symptoms of the lung include shortness of breath, difficulty exercising and functioning, and cough.
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Interstitial lung disease (ILD):
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Interstitial lung disease is a common symptom of patients with systemic sclerosis. ILD occurs when there is a building of fibrosis or progressive scar tissue in the lung which eventually affects one’s ability to breathe and get sufficient oxygen into your bloodstream. Treatment often involves steroid usage and oxygen.
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Pulmonary hypertension (PH):
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Pulmonary Hypertension is a common symptom of lung involvement in scleroderma. PH affects arteries in the lungs and the right side of the heart. It increases blood pressure in the blood vessels of the lung and worsens over time. However, medications and oxygen therapy can help lessen symptoms and improve quality of life.
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For more information about how scleroderma affects the lungs, check out this video playlist featuring our library of on-demand videos. You can also follow the link below to learn more about our Scleroderma & the Lungs Support Group.
To learn more about scleroderma, the GI tract, and nutrition, check out this video playlist below.
Gastrointestinal Tract (GI)
People with systemic sclerosis may develop problems in the gastrointestinal tract including the esophagus, stomach, and bowels. Fibrosis can develop in the gastrointestinal muscles resulting in abnormal movement of the gastrointestinal tract as well as food and nutrients not being well absorbed.
Kidney Involvement
Kidney complications with scleroderma can range from quite mild to severe. Early signs include mild high blood pressure and blood test abnormalities which may not progress. Renal crisis, a very dangerous problem in systemic sclerosis, results from rapid blood vessel damage in the kidneys​.
Scleroderma and the Hands
Hand involvement is one of the most common symptoms of scleroderma, and one of the symptoms that leads to an early diagnosis. The "hard skin" of scleroderma will often constrict the movement of the hands, making everyday activity difficult.
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Raynaud’s phenomenon:
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Raynaud's phenomenon is present in about 90 – 95% of scleroderma patients. Raynaud’s phenomenon is the condition that results from constriction of the blood vessels. Subsequently, the digits and extremities e.g. the fingers/toes, etc. become white (blood vessel constriction), then blue (loss of oxygen) then red (reflex opening). This occurs most often in cold environments and is why many scleroderma patients wear gloves.
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Calcinosis
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Calcinosis is another common symptom present in the hands. Calcinosis is the phenomenon in which calcium deposits arise in or under the skin. They are often felt as hard lumps that may be painful.
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Learn more about how scleroderma affects the hands with this informational video.
Scleroderma and Mental Health
Living with a chronic illness can lead to frustration, anxiety or depression. Many scleroderma patients also experience chronic fatigue in conjunction with their symptoms. Some people experience “brain fog” and confusion. But it is important to remember that you are not alone in this fight. Joining a support group and building your support network are excellent paths towards a less stressful and better lifestyle.
Joining a support group is one of the best ways to manage your mental health, get answers to your questions and find additional resources. Learn more about support groups and sign up below. Even if you don't see a local support group near you, most groups meet online and we welcome anyone from any geographic region.
Scleroderma and Dentistry
Scleroderma patients may experience a tightening or hardening of the skin on the face. The opening of the mouth may similarly be affected, called microstomia, which can impact oral hygiene and food intact. Additionally, many scleroderma patients may suffer from xerostomia or chronic dry mouth. This dry mouth can lead to an increased risk of Periodontal disease and decay. Facial exercises and preventative dental care are paramount to reducing symptoms. Consult your dentist to learn about augmentation devices and a facial exercise routine.
Learn more about scleroderma and dentistry.
More Information and Events
We offer education events presented by experts in the field, to help you better understand scleroderma and how to manage it. Additionally, our YouTube channel has on-demand videos on a wide variety of topics. Sessions cover a range of topics from nutrition to lung involvement to GI issues. We continue to add new programs throughout the year. Check back for updates or sign up for email alerts.
Scleroderma Centers
Scleroderma Centers are trusted institutions dedicated to helping scleroderma patients and patients seeking diagnosis. Many of these institutions have physicians on the cutting-edge of patient research.
Scleroderma Centers in the Chicago area: ​
Northwestern Scleroderma Program
Appointments New Patients: (312) 695-6119
675 N St Clair St, Suite 14-100
Chicago, IL, 60611
University of Chicago, Scleroderma Clinic
Appointments: (773) 702-6119 or (888) 824-0200
5841 South Maryland Ave
Chicago, IL, 60637
University of Illinois at Chicago, Section of Rheumatology
Appointments: (312) 413-4244
1819 W. Polk St., A312 M/C 733
Chicago, IL, 60612
To find scleroderma centers outside of Chicago, please reach out to us at info@stopscleroderma.org or by phone at
312-660-1131.