What is Scleroderma? |
| This page was written by Shelley Ensz, and has not yet been medically edited. See Disclaimer. |
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| What is Scleroderma? |
 Scleroderma is a rare, chronic autoimmune disease which afflicts an estimated 300,000 Americans, primarily females who are 30 to 50 years old at onset. The overall occurrence is 1 per 1,000 (.001% of the 310 million U.S. population) and the ratio of women to men is about four to one. |
| 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 |
| 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. |
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| Brochures About Scleroderma |
| Brochures About Scleroderma. Free brochures in PDF format, to print yourself. Or, order printed copies. Includes valuable systemic scleroderma symptom checklist! ISN. |
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| Books About Scleroderma |
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 ) |
| Diagnosis of Scleroderma |
| Diagnosis of Scleroderma is usually achieved through your medical history and a thorough physical exam. Blood tests are performed to look for specific antibodies. A skin biopsy may be performed as well as organ specific tests to check for systemic involvment. ISN. |
| How to Diagnose Scleroderma. Know the symptoms. Consult with Professsionals. Know the risks groups. cHow.com. |
| Profile of Pre-Scleroderma Evolution. All those patients who evolved to SSc presented the following at baseline: Raynaud's, positive anti-Scl-70 or anticentromere, sclerodactyly or visceral (esophageal) involvement and slow capillaroscopic pattern of scleroderma. E. Delgado. (THU0323) EULAR 2009. (Also see: Diagnosis of Scleroderma) |
| Systemic Scleroderma Symptom Checklist in our free PDF from the ISN's "What is Scleroderma?" brochures. |
| Difficult Diagnosis |
| 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. |
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| Causes of Scleroderma |
| 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. |
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| Scleroderma is Not Contagious or Cancerous |
| 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 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. |
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| Scleroderma Clinical Trials and Treatments |
| 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. |
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| Information about Scleroderma |
| Northwestern Scleroderma Program. More than 300,000 Americans suffer from scleroderma, a progressive autoimmune disease that predominantly affects young women. Scleroderma leads to hardening of the skin, lungs, blood vessels, and other organs. At the Northwestern Scleroderma Program, we provide comprehensive patient care and pursue research that will lead to more effective treatments, and ultimately, a cure. Northwestern University. December, 2009. |
| Study of a Topical Formulation for the Treatment and Prevention of Raynaud's Phenomenon Symptoms. The purpose of this study is to determine if Vascana, a novel topical formulation of nitroglycerin, is effective in the treatment and prevention of the symptoms associated with Raynaud's Phenomenon. This trial is currently recruiting. Verified by MediQuest Therapeutics, December 2009. clinicaltrials.gov. (Also see: Clinical Trials for Raynaud's) |
| Clinical Correlates of Self-reported Physical Health Status in Systemic Sclerosis. In multivariate analysis, significant clinical predictors of the SF-36 Physical Component Summary score (PCS) were shortness of breath, number of gastrointestinal problems, skin score, swollen joint count, and age. Marie Hudson. Journal of Rheumatology. May 15, 2009. |
| Scleroderma (SSc) prevalence: Demographic variations in a population-based sample. We estimated SSc prevalence in 2003 at 74.4 cases per 100,000 women and 13.3 cases per 100,000 men. Prevalence was higher for older individuals, particularly in urban women (161.2 cases per 100,000). Prevalence was lowest in young men (in rural areas, as low as 2.8 cases per 100,000). S. Bernatsky. Arthritis Rheum. 2009 Mar 15. |
| Scleroderma: A Rare but Devastating Disease. The skin thickens and tightens, becoming deformed and unyielding. Then, the skin around the body's joints allows for less and less bending. Hands, elbows and knees all become stiff. "Scleroderma is not less frequent than multiple sclerosis, but MS gets 10 times more funding." Medicine OnLine (HealthDay). 07/27/07. |
| Rheumatic Diseases: The Unnoticed Elephant in the Room. The group of conditions known as rheumatic diseases, or musculoskeletal (MSK) disorders, is indeed an elephant, given the magnitude of their impact on the population. Ediitorial. J of Rheumatology. January 2008. |
| Scleroderma (Systemic Sclerosis). American College of Rheumatology. |
| Overview of Scleroderma MayoClinic. |
| Living With Scleroderma. Understanding Your Disease. This Scleroderma Educational Program was developed by Dr. Jennifer Haythornthwaite with help from Dr. Wigley of the Johns Hopkins Scleroderma Center to help patients learn about Scleroderma and understand more about the physiological and psychological effects of the disease. John Hopkins Medicine, Scleroderma Center. |
| History of Scleroderma. Great resource for school reports, includes information about Paul Klee, the abstract painter who is perhaps the most famous person to have had scleroderma. ISN. |
| Scleroderma Webcast #1 with Dr. Art Theodore, BUMC |
 Scleroderma Webcast #1 Replay and Scleroderma Webcast Transcript (PDF). Dr. Art Theodore is a nationally recognized expert with special interests in systemic sclerosis and interstitial lung disease from Boston University Medical Campus. 10-30-07. PatientPower. |
| Scleroderma Webcast #2 with Dr. Art Theodore, BUMC |
| Scleroderma Webcast #2 Replay. Dr. Art Theodore is a nationally recognized expert with special interests in systemic sclerosis and interstitial lung disease from Boston University Medical Campus. 04-25-08. PatientPower. (Also see: Pulmonary Involvement ) |
| Voices of Scleroderma Volume 1 Book offers medical information about scleroderma by leading experts. Includes scleroderma symptom checklist, plus 100 personal stories of people living with scleroderma and related illnesses. 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). |
| What is Scleroderma? Arthritis Foundation (U.S.). |
| Scleroderma Patient Stories |
| 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. |
| References |
| (1) Audio pronunciations for this page are from Mirriam-Webster Online Dictionary. |
