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: 9 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: 9 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 925 free, full-text research articles on human participants. First 3 results:

Autologous Stem-Cell Transplantation for Severe Scleroderma.
 

Author(s): Keith M Sullivan, Ellen A Goldmuntz, Daniel E Furst

Journal: N. Engl. J. Med.. 2018 03;378(11):1066-1067.

 

Last Updated: 31 Dec 1969

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Clinical and serological features of systemic sclerosis in a multicenter African American cohort: Analysis of the genome research in African American scleroderma patients clinical database.
 

Author(s): Nadia D Morgan, Ami A Shah, Maureen D Mayes, Robyn T Domsic, Thomas A Medsger, Virginia D Steen, John Varga, Mary Carns, Paula S Ramos, Richard M Silver, Elena Schiopu, Dinesh Khanna, Vivien Hsu, Jessica K Gordon, Heather Gladue, Lesley A Saketkoo, Lindsey A Criswell, Chris T Derk, Marcin A Trojanowski, Victoria K Shanmugam, Lorinda Chung, Antonia Valenzuela, Reem Jan, Avram Goldberg, Elaine F Remmers, Daniel L Kastner, Fredrick M Wigley, Pravitt Gourh, Francesco Boin

Journal: Medicine (Baltimore). 2017 Dec;96(51):e8980.

 

Racial differences exist in the severity of systemic sclerosis (SSc). To enhance our knowledge about SSc in African Americans, we established a comprehensive clinical database from the largest multicenter cohort of African American SSc patients assembled to date (the Genome Research ...

Last Updated: 31 Dec 1969

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Case report: One case of primary AL amyloidosis repeatedly misdiagnosed as scleroderma.
 

Author(s): Linge Sun, Lei Zhang, Wenlu Hu, Tian-Fang Li, Shengyun Liu

Journal: Medicine (Baltimore). 2017 Dec;96(50):e8771.

 

Amyloid light chain (AL) results from the deposition of immunoglobulin light chain fragments, and can affect multiple organs/systems. Our patient was diagnosed as scleroderma repeatedly because of extensive skin thickening and hardening, but the treatment was not effective. We did ...

Last Updated: 31 Dec 1969

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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 89 free, full-text review articles on human participants. First 3 results:

Systemic sclerosis sine scleroderma.
 

Author(s): Eugeniusz J Kucharz, Magdalena Kopeć-Mędrek

Journal: Adv Clin Exp Med. 2017 Aug;26(5):875-880.

 

Systemic sclerosis is a rare generalized disease with scleroderma, i.e. skin thickening as one of the most common symptoms. The disease has 2 main subsets, diffuse and limited forms. The subset known as systemic sclerosis sine scleroderma (ssSSc) is a very rare subset characterized ...

Last Updated: 31 Dec 1969

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Role of anti-receptor autoantibodies in pathophysiology of scleroderma.
 

Author(s): Melvin Berger, Virginia D Steen

Journal: Autoimmun Rev. 2017 Oct;16(10):1029-1035.

 

The pathophysiology of SSc-mediated organ damage is complex and not well understood. Hallmarks of the disease include skin thickening, vasculopathy and gastrointestinal dysmotility. Diverse anti-nuclear antibodies can be used as biomarkers for classification and prognosis, but their ...

Last Updated: 31 Dec 1969

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Delayed onset of posterior reversible encephalopathy syndrome in a case of scleroderma renal crisis with maintenance hemodialysis: Case report and literature review.
 

Author(s): Ching-Yang Chen, Shin-Yuan Hung, Yi-Jer Lee, Yi-Chan Lin, Chu-Cheng Pai

Journal: Medicine (Baltimore). 2016 Dec;95(52):e5725.

 

In some cases, scleroderma renal crisis (SRC) is not easily distinguishable from other thrombotic microangiopathies such as thrombotic thrombocytopenic purpura, especially when the presentation includes neurological or extra-renal manifestations. Here, we present a case of SRC who ...

Last Updated: 31 Dec 1969

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Scleroderma Registry & Repository at the Hospital for Special Surgery
 

Status: Recruiting

Condition Summary: Scleroderma

 

Last Updated: 14 Mar 2018

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Last Updated: 13 Mar 2018

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