Scleroderma is a rare, chronic rheumatic disease. The combined forms of scleroderma, including localized, systemic, and related conditions, affect an estimated 300,000 Americans, primarily females who are 30 to 50 years old at onset. The overall occurrence is 1 per 1,000 (.1% of the 310 million U.S. population) and the ratio of women to men is about four to one.
For the subtype of systemic sclerosis, which is the most serious form of the disease, there are about 75,000 current cases in the United States.
About 20 to 24 new cases per million population are diagnosed each year in the U.S. Worldwide, there may be as many as 2.5 million persons with scleroderma.
Overview of Scleroderma. Mayo Clinic.
Scleroderma is both a rheumatic disease and a connective tissue disease. The term rheumatic disease refers to a group of conditions characterized by inflammation and/or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects tissues such as skin, tendons, and cartilage. NIAMS.
Types of Scleroderma. There are two main types of scleroderma: Localized and Systemic. The systemic forms can affect any part of the body (skin, blood vessels, and internal organs.) The systemic forms are also referred to as "systemic sclerosis" plus other terms such as diffuse, limited, CREST, and overlap.
The localized forms are morphea and linear. They affect only the skin (and sometimes the underlying tissues) but do not affect the internal organs, or reduce one's life expectancy in any way. When any form of scleroderma (either localized or systemic) occurs in children, it is also called Childhood Scleroderma or Juvenile Scleroderma.
Two Main Types: Localized and Systemic
|Localized (Morphea, Linear, En Coup)
Systemic Sclerosis (Limited/CREST, Diffuse, Overlap)
Brochures About Scleroderma. Free brochures in PDF format, to print yourself. Or, order printed copies. Includes the valuable systemic scleroderma symptom checklist! ISN.
We strongly recommend the ISN's Voices of Scleroderma book series for top quality medical and support information. Each volume includes articles by world scleroderma experts along with 100 patients, caregiver and survivor stories for all types of scleroderma, who share how they are coping with all types of scleroderma symptoms. Centerpiece medical articles are by the late Dr. Joe Korn, Prof. Carol Black, and Dr. Marco Matucci-Cerinic. (Also see Voices of Scleroderma Book Series and Order ISN Books)
Checklist of Scleroderma Symptoms. Please consult your doctor if you have two or more of the following symptoms, which are sometimes due to systemic sclerosis (scleroderma). ISN.
Diagnosis of Scleroderma is usually achieved through medical history and a thorough physical exam. Blood tests are performed to look for specific antibodies. A skin biopsy may be done, as well as organ specific tests to check for systemic involvement. ISN.
Difficult Diagnosis. Proper diagnosis of scleroderma is often long and difficult. Often the diagnostic uncertainty and frustration takes a huge psychological toll on these patients, who describe their journey to diagnosis as being by far the most difficult part of their illness. ISN.
Causes of Scleroderma. The cause of scleroderma is unknown. Some cases of scleroderma have been linked to chemical exposures. Genetics, fetal cells, gluten sensitivity, and viruses might also be factors in the development of scleroderma, and it may be due to a combination of factors. ISN.
History of Scleroderma. This is a great resource for school reports. It includes information about Paul Klee, the abstract painter who is perhaps the most famous person to have had scleroderma. ISN.
ISN Guide to Scleroderma Experts. Because scleroderma is such a rare disease, and is complicated and difficult to treat, experts are very few and far between. Use this, plus our compilation of other listings, to find the best expert for you! ISN.
Scleroderma is not classified as contagious, which means that you cannot get scleroderma by shaking hands, hugging, kissing, sexual contact, contact with blood or bodily fluids, sharing eating utensils, or by airborne contact from coughing or sneezing. And it is not cancerous.
Systemic Scleroderma Symptoms. Systemic sclerosis (scleroderma) can affect every part of the body, including the skin, blood vessels, and all of the internal organs. There are also dozens of associated conditions and related autoimmune diseases. ISN.
Scleroderma Treatments and Clinical Trials. At present, there are no proven treatments or cure for any forms of scleroderma. However, there are effective therapies for many of the symptoms. Most of the symptoms listed in this website are those of systemic scleroderma. ISN.
Scleroderma Patient and Caregiver Stories. We feature the world's largest collection of scleroderma patient and caregiver stories, in many languages. The stories from this site also formed the basis for the ISN's Voices of Scleroderma book series. ISN.
What is Scleroderma? "Imagine for me if you would that in certain areas of your body the skin has begun to thicken and harden. Then on top of this, you have a painful sensitivity to cold, frequent heartburn, stiff joints and various other internal problems." Amy (Daughter of a Systemic Sclerosis patient).
(1) Audio pronunciations for this page are from Mirriam-Webster Online Dictionary.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team or Volunteer.
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Toll Free US/Canada Scleroderma Hotline
*5-13-2015: This is a temporary number while our usual 1-800-564-7099 is being ported to a new provider.