Scleroderma

Common Name(s)

Scleroderma

Scleroderma is actually a group of rare conditions that harden and tighten the skin and connective tissue. Connective tissues provide support to many parts of the body including skin, bones, blood vessels, tendons, ligaments, and other organs. In some individuals scleroderma only affects the skin, but it can also harm blood vessels, lungs, kidneys, and the digestive tract. Symptoms associated with scleroderma vary but may include hardened thickened skin especially on hands or face that appears smooth and shiny, upset digestive system (acid reflux, difficulty swallowing, diarrhea, or constipation), shortness of breath, cold fingers and toes (Raynaud’s disease), ulcers on fingertips, dry eyes or mouth (Sjogren’s syndrome), swelling of hands, small red spots on face and chest (telangiectasia), painful swollen joints and muscle weakness.

Scleroderma is caused by an overproduction and accumulation of a protein that makes up the connective tissues called collagen. Doctors do not know what causes large amounts of collagen to be made and built up in body tissue. Scleroderma is more common in women than in men and typically onsets between the ages of 30 and 50. Scleroderma is not contagious, infectious, or cancerous.

Scleroderma takes many forms and affects many different areas of the body, making it difficult to diagnose. A doctor may perform a physical exam along with blood tests, breathing tests, a CT scan, and an echocardiogram of your heart to diagnose scleroderma. While there is no cure for scleroderma, treatments can lessen symptoms and help prevent further complication. Therapies can also be used to help lessen pain and improve mobility. If you or someone you know has been diagnosed with scleroderma, talk to your doctor about the most current treatment options. Support groups are also a good source of information and community support.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Scleroderma" for support, advocacy or research.

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

AGMD is a nonprofit international organization which serves as an integral educational resource concerning digestive motility diseases and disorders. It also functions as an important information base for members of the medical and scientific communities. In addition, it provides a forum for patients suffering from digestive motility diseases and disorders as well as their families and members of the medical community.

Last Updated: 28 Feb 2015

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HealthyWomen

HealthyWomen (HW) is the nation's leading independent health information source for women. Our core mission is to educate, inform and empower women to make smart health choices for themselves and their families. For more than 20 years, millions of women have been coming to HW for answers to their most pressing and personal health care questions. Through our wide array of online and print publications, HW provides health information that is original, objective, reviewed by medical experts and reflective of the advances in evidence-based health research.

Last Updated: 1 Jul 2015

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International Scleroderma Network

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

Last Updated: 18 Apr 2010

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Raynaud's & Scleroderma Ireland

• To improve the lives of patients, their families and carers by providing support, advice and information. • To increase the awareness of Raynaud’s and Scleroderma amongst healthcare professionals, Government and Statutory agencies and the general public. • To work in partnership with appropriate healthcare professionals and agencies to promote and co-ordinate the attainment of the objectives of the strategy. • Maintain a working environment that fosters communication, teamwork and diversity among all members of staff- permanent, temporary and voluntary

Last Updated: 6 May 2014

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Scleroderma Foundation

Our three-fold mission is to help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals, and educational information, to promote public awareness and education through patient and health professional seminars, literature, and publicity campaigns, and to stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.

Last Updated: 19 Oct 2012

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Scleroderma" for support, advocacy or research.

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

AGMD is a nonprofit international organization which serves as an integral educational resource concerning digestive motility diseases and disorders. It also functions as an important information base for members of the medical and scientific communities. In addition, it provides a forum for patients suffering from digestive motility diseases and disorders as well as their families and members of the medical community.

http://www.agmd-gimotility.org

Last Updated: 28 Feb 2015

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HealthyWomen

HealthyWomen (HW) is the nation's leading independent health information source for women. Our core mission is to educate, inform and empower women to make smart health choices for themselves and their families. For more than 20 years, millions of women have been coming to HW for answers to their most pressing and personal health care questions. Through our wide array of online and print publications, HW provides health information that is original, objective, reviewed by medical experts and reflective of the advances in evidence-based health research.

http://www.healthywomen.org

Last Updated: 1 Jul 2015

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International Scleroderma Network

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

http://www.sclero.org/

Last Updated: 18 Apr 2010

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Raynaud's & Scleroderma Ireland

• To improve the lives of patients, their families and carers by providing support, advice and information. • To increase the awareness of Raynaud’s and Scleroderma amongst healthcare professionals, Government and Statutory agencies and the general public. • To work in partnership with appropriate healthcare professionals and agencies to promote and co-ordinate the attainment of the objectives of the strategy. • Maintain a working environment that fosters communication, teamwork and diversity among all members of staff- permanent, temporary and voluntary

http://www.irishraynauds.com

Last Updated: 6 May 2014

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Scleroderma Foundation

Our three-fold mission is to help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals, and educational information, to promote public awareness and education through patient and health professional seminars, literature, and publicity campaigns, and to stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.

http://www.scleroderma.org

Last Updated: 19 Oct 2012

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Scleroderma" returned 782 free, full-text research articles on human participants. First 3 results:

Long-term follow-up of patients with scleroderma interstitial lung disease treated with intravenous cyclophosphamide pulse therapy: a single-center experience.
 

Author(s): Alexandra Balbir-Gurman, Mordechai Yigla, Ludmila Guralnik, Emilia Hardak, Anna Solomonov, Alexander P Rozin, Kohava Toledano, Amir Dagan, Rema Bishara, Doron Markovits, Menahem A Nahir, Yolanda Braun-Moscovici

Journal: Isr. Med. Assoc. J.. 2015 Mar;17(3):150-6.

 

Scleroderma lung disease (ILD-SSc) is treated mainly with cyclophosphamide (CYC). The effectiveness of CYC was judged after 12-24 months in most reports.

Last Updated: 7 May 2015

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[Diffuse interstitial pneumonia revealing systemic sclerosis sine scleroderma].
 

Author(s): Lilia Baili, Zohra Aydi, Imene Rachdi, Besma Ben Dhaou, Fatma Boussema, Lilia Rokbani

Journal: Tunis Med. 2014 Jul;92(7):508-10.

 

Last Updated: 17 Mar 2015

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Oxidative stress-dependent activation of collagen synthesis is induced in human pulmonary smooth muscle cells by sera from patients with scleroderma-associated pulmonary hypertension.
 

Author(s): Francesco Boin, Gian Luca Erre, Anna Maria Posadino, Annalisa Cossu, Roberta Giordo, Gaia Spinetti, Giuseppe Passiu, Costanza Emanueli, Gianfranco Pintus

Journal:

 

Pulmonary arterial hypertension is a major complication of systemic sclerosis. Although oxidative stress, intima hyperplasia and a progressive vessel occlusion appear to be clearly involved, the fine molecular mechanisms underpinning the onset and progression of systemic sclerosis-associated ...

Last Updated: 8 Aug 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Scleroderma" returned 82 free, full-text review articles on human participants. First 3 results:

Factors associated with development of gastrointestinal problems in patients with scleroderma: a protocol for a systematic review.
 

Author(s): Brian Younho Hong, Raymond Giang, Lawrence Mbuagbaw, Maggie Larche, Lehana Thabane

Journal:

 

Scleroderma affects the gastrointestinal (GI) tract in 90% of all cases. Malnutrition, diarrhea, and constipation are some GI complications that can stem from scleroderma, and they contribute considerably to impairment in quality of life. Reports of haphazard clusters of high prevalence ...

Last Updated: 20 Oct 2014

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Scleroderma renal crisis in a case of mixed connective tissue disease.
 

Author(s): Mukul Vij, Vinita Agrawal, Manoj Jain

Journal: Saudi J Kidney Dis Transpl. 2014 Jul;25(4):844-8.

 

Mixed connective tissue disease (MCTD) is an overlap syndrome first defined in 1972 by Sharp et al. In this original study, the portrait emerged of a connective tissue disorder sharing features of systemic lupus erythematosus, systemic sclerosis (scleroderma) and polymyositis. Scleroderma ...

Last Updated: 27 Jun 2014

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Screening patients with scleroderma for pulmonary arterial hypertension and implications for other at-risk populations.
 

Author(s): Johannes P Schwaiger, Dinesh Khanna, J Gerry Coghlan

Journal: Eur Respir Rev. 2013 Dec;22(130):515-25.

 

Pulmonary arterial hypertension (PAH) is a progressive vasculopathy that is advanced by the time symptoms develop. As symptoms are nonspecific and the condition uncommon, continued progression toward end-stage disease occurs for an average of 2 years between symptom onset and diagnosis. ...

Last Updated: 2 Dec 2013

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Multi-center, Web Based Observational Study of Pulmonary Hypertension in Scleroderma Patients
 

Status: Recruiting

Condition Summary: Systemic Sclerosis; Scleroderma; Pulmonary Hypertension; Pulmonary Arterial Hypertension

 

Last Updated: 9 Mar 2015

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Scleroderma Registry & Repository at the Hospital for Special Surgery
 

Status: Recruiting

Condition Summary: Scleroderma

 

Last Updated: 26 Mar 2015

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Zibotentan Better Renal Scleroderma Outcome Study
 

Status: Recruiting

Condition Summary: Scleroderma; Scleroderma Renal Crisis; Chronic Kidney Disease

 

Last Updated: 19 Nov 2014

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