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

Anti-neutrophil cytoplasmic antibody negative crescentic paucimmune glomerulonephritis in a case of scleroderma with systemic lupus erythematosus overlap.
 

Author(s): Rohit Tewari, Sonia Badwal, Arun Kumar, Shankar Subramaniam, V S Nijhawan, V Srinivas

Journal: Saudi J Kidney Dis Transpl. 2016 May;27(3):602-5.

 

Renal Involvement in scleroderma is a known problem and the manifestations are well described. Renal involvement in systemic lupus erythematosus (SLE) is also well known. However, in scleroderma and SLE overlap syndrome, the renal findings may vary being a combination of features ...

Last Updated: 24 May 2016

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Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study.
 

Author(s): Stephanie T Gumuchian, Sandra Peláez, Vanessa C Delisle, Marie-Eve Carrier, Lisa R Jewett, Ghassan El-Baalbaki, Catherine Fortune, Marie Hudson, Ann Impens, Annett Körner, Jennifer Persmann, Linda Kwakkenbos, Susan J Bartlett, Brett D Thombs

Journal:

 

Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood.

Last Updated: 24 Mar 2016

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The relationship between skin symptoms and the scleroderma modification of the health assessment questionnaire, the modified Rodnan skin score, and skin pathology in patients with systemic sclerosis.
 

Author(s): Jessica Ziemek, Ada Man, Monique Hinchcliff, John Varga, Robert W Simms, Robert Lafyatis

Journal: Rheumatology (Oxford). 2016 May;55(5):911-7.

 

To determine how well skin symptoms considered specific to SSc are captured by patient reported outcomes currently used for assessing patients with SSc, the SHAQ, or skin disease, the Skindex-29; and how well these symptoms correlate with the extent of skin disease on physical exam ...

Last Updated: 15 Apr 2016

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

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

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

Journal:

 

Up to 90% of people with scleroderma have gastrointestinal (GI) problems such as constipation, bloating, diarrhea, and malabsorption. These problems significantly impair quality of life. Our objective was to determine the risk factors for gastrointestinal issues in people with scleroderma.

Last Updated: 31 Dec 2015

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Update on mesenchymal stem cell-based therapy in lupus and scleroderma.
 

Author(s): Audrey Cras, Dominique Farge, Thierry Carmoi, Jean-Jacques Lataillade, Dan Dan Wang, Lingyun Sun

Journal:

 

Current systemic therapies are rarely curative for patients with severe life-threatening forms of autoimmune diseases (ADs). During the past 15 years, autologous hematopoietic stem cell transplantation has been demonstrated to cure some patients with severe AD refractory to all other ...

Last Updated: 3 Nov 2015

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Cancer and scleroderma: a paraneoplastic disease with implications for malignancy screening.
 

Author(s): Ami A Shah, Livia Casciola-Rosen

Journal: Curr Opin Rheumatol. 2015 Nov;27(6):563-70.

 

Recent data suggest a paraneoplastic mechanism of scleroderma pathogenesis in unique subsets of scleroderma patients. In this article, we review these data, explore potential links between cancer and scleroderma, and propose an approach to malignancy screening in scleroderma.

Last Updated: 24 Sep 2015

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in Genetics Home Reference.

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

Scleroderma Registry & Repository at the Hospital for Special Surgery
 

Status: Recruiting

Condition Summary: Scleroderma

 

Last Updated: 17 Feb 2016

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Last Updated: 1 Dec 2015

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Autologous Stem Cell Systemic Sclerosis Immune Suppression Trial
 

Status: Recruiting

Condition Summary: Scleroderma

 

Last Updated: 15 Sep 2016

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