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  3. Scleroderma
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Scleroderma


Información en español Title




Not a rare disease Not a rare disease

Categories:
Connective tissue diseases
Subtypes:
Localized scleroderma; Systemic scleroderma

Summary Summary


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Scleroderma is an autoimmune disorder that may involve changes in the skin, blood vessels, muscles, and internal organs.[1] There are two main types: localized scleroderma, which affects only the skin; and systemic scleroderma, which affects the blood vessels and internal organs, as well as the skin.[2] These two main types also have sub-types.

Localized scleroderma subtypes include:[3]
  • Linear scleroderma
  • Morphea
Systemic scleroderma subtypes include:[3][4]
  • Diffuse cutaneous systemic sclerosis
  • Limited cutaneous systemic sclerosis (which includes CREST syndrome)
  • Limited Systemic Sclerosis
The underlying cause of scleroderma is currently unknown; however, some scientists suspect it may be related to a buildup of collagen in the skin and other organs due to an abnormal immune system response. Some cases of scleroderma are induced by environmental factors or occur in association with other underlying disorders such as rheumatoid arthritis, lupus or Sjogren syndrome.[1][5] There is no cure, but various treatments may relieve symptoms.[2]
Last updated: 9/12/2016

Symptoms Symptoms


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This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 68 |
Medical Terms Other Names
Learn More:
HPO ID
80%-99% of people have these symptoms
Abnormal stomach morphology 0002577
Acrocyanosis
Persistent blue color of hands, feet, or parts of face
0001063
Arthralgia
Joint pain
0002829
Arthritis
Joint inflammation
0001369
Autoimmunity
Autoimmune disease
Autoimmune disorder
[ more ]
0002960
Cheilitis
Inflammation of the lips
0100825
Chest pain 0100749
Cough
Coughing
0012735
Dry skin 0000958
Fatigue
Tired
Tiredness
[ more ]
0012378
Gangrene
Death of body tissue due to lack of blood flow or infection
0100758
Gastroesophageal reflux
Acid reflux
Acid reflux disease
Heartburn
[ more ]
0002020
Gingivitis
Inflamed gums
Red and swollen gums
[ more ]
0000230
Lack of skin elasticity 0100679
Muscle weakness
Muscular weakness
0001324
Myalgia
Muscle ache
Muscle pain
[ more ]
0003326
Nausea and vomiting 0002017
Restrictive ventilatory defect
Stiff lung or chest wall causing decreased lung volume
0002091
Skin ulcer
Open skin sore
0200042
Subcutaneous nodule
Firm lump under the skin
Growth of abnormal tissue under the skin
[ more ]
0001482
Xerostomia
Dry mouth
Dry mouth syndrome
Reduced salivation
[ more ]
0000217
30%-79% of people have these symptoms
Abdominal pain
Pain in stomach
Stomach pain
[ more ]
0002027
Abnormal pattern of respiration
Abnormal respiratory patterns
Unusual breathing patterns
[ more ]
0002793
Arrhythmia
Abnormal heart rate
Heart rhythm disorders
Irregular heart beat
Irregular heartbeat
[ more ]
0011675
Bowel incontinence
Loss of bowel control
0002607
Chondrocalcinosis
Calcium deposits in joints
0000934
Cranial nerve paralysis 0006824
Decreased nerve conduction velocity 0000762
Feeding difficulties in infancy 0008872
Hyperkeratosis 0000962
Hypopigmented skin patches
Patchy loss of skin color
0001053
Malabsorption
Intestinal malabsorption
0002024
Mucosal telangiectasiae 0100579
Myocardial infarction
Heart attack
0001658
Myositis
Muscle inflammation
0100614
Nephropathy 0000112
Papule 0200034
Pericarditis
Swelling or irritation of membrane around heart
0001701
Pulmonary fibrosis 0002206
Recurrent urinary tract infections
Frequent urinary tract infections
Repeated bladder infections
Repeated urinary tract infections
Urinary tract infections
Urinary tract infections, recurrent
[ more ]
0000010
Telangiectasia of the skin 0100585
Urticaria
Hives
0001025
5%-29% of people have these symptoms
Abnormal rectum morphology
Abnormality of the rectum
Anomaly of the rectum
[ more ]
0002034
Abnormal tendon morphology
Abnormal shape of tendon
0100261
Abnormality of the anus 0004378
Behavioral abnormality
Behavioral changes
Behavioral disorders
Behavioral disturbances
Behavioral problems
Behavioral/psychiatric abnormalities
Behavioural/Psychiatric abnormality
Psychiatric disorders
Psychiatric disturbances
[ more ]
0000708
Cachexia
Wasting syndrome
0004326
Cirrhosis
Scar tissue replaces healthy tissue in the liver
0001394
Congestive heart failure
Cardiac failure
Cardiac failures
Heart failure
[ more ]
0001635
Erectile dysfunction
Abnormal erection
Erectile abnormalities
[ more ]
0100639
Gastrointestinal hemorrhage
Gastrointestinal bleeding
0002239
Gingival bleeding
Bleeding gums
0000225
Heart block 0012722
Hematuria
Blood in urine
0000790
Hypertrophic cardiomyopathy
Enlarged and thickened heart muscle
0001639
Joint dislocation
Joint dislocations
Recurrent joint dislocations
[ more ]
0001373
Memory impairment
Forgetfulness
Memory loss
Memory problems
Poor memory
[ more ]
0002354
Narrow mouth
Small mouth
0000160
Neoplasm of the lung
Lung tumor
0100526
Osteolysis
Breakdown of bone
0002797
Osteomyelitis
Bone infection
0002754
Peripheral neuropathy 0009830
Pulmonary arterial hypertension
Increased blood pressure in blood vessels of lungs
0002092
Pulmonary infiltrates
Lung infiltrates
0002113
Renal insufficiency
Renal failure
Renal failure in adulthood
[ more ]
0000083
Seizure 0001250
Skeletal muscle atrophy
Muscle degeneration
Muscle wasting
[ more ]
0003202
Tracheoesophageal fistula 0002575
Showing of 68 |
Do you have more information about symptoms of this disease? We want to hear from you.
Last updated: 2/1/2021
Do you have updated information on this disease? We want to hear from you.

Treatment Treatment


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There is no cure for scleroderma, but treatments are available to relieve symptoms and limit damage to organs. Treatment varies depending on each person's symptoms.[2]

Medications that may be used to treat scleroderma include:[1]
  • Corticosteroids
  • Immune suppressing medications (methotrexate, Cytoxan)
  • Nonsteroidal anti-inflammatory drugs (NSAIDs)

Other treatments for specific symptoms may include:[1][6][7]

  • Drugs for heartburn or swallowing problems (proton pump inhibitors)
  • Prokinetic agents to speeding the movement of food through the stomach and intestines
  • Antibiotics to address malabsorption syndrome
  • Blood pressure medications (particularly ACE inhibitors) for high blood pressure or kidney problems
  • Antihistamines and skin moisturizers to relieve itching
  • Medicines to prevent (e.g., Bosentan) or treat (e.g., iloprost) ulcers
  • Medicines to improve breathing (See: Pulmonary hypertension)
  • Medicines to treat lung scarring (e.g., cyclophosphamide)
  • Medications to treat Raynaud's phenomenon (e.g., nifedipine, iloprost)

More detailed information regarding the treatment of scleroderma can be accessed through Medscape Reference.

Last updated: 9/15/2016

Research Research


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Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Scleroderma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".
  • The Scleroderma Clinical Trials Consortium is an international organization of scleroderma clinical researchers. The consortium Web site contains a listing of active scleroderma trials, past copies of the Scleroderma Care and Research journal, and a tool for finding your nearest member institution. 

Patient Registry

  • The Autoimmune Registry supports research for Scleroderma by collecting information about patients with this and other autoimmune diseases. You can join the registry to share your information with researchers and receive updates about participating in new research studies. Learn more about registries.
  • A registry supports research by collecting of information about patients that share something in common, such as being diagnosed with Scleroderma. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. Some registries collect contact information while others collect more detailed medical information. Learn more about registries.

    Registries for Scleroderma:
    CONQUER Registry?
     

Organizations Organizations


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Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

  • International Scleroderma Network (ISN)
    7455 France Ave So #266
    Edina, MN 55435-4702
    Toll-free: 1-800-564-7099
    Telephone: +1-952-831-3091
    E-mail: isn@sclero.org
    Website: https://www.sclero.org/index.html
  • Scleroderma & Raynaud's UK (SRUK)
    18-20 Bride Lane
    London, EC4Y 8EE United Kingdom
    Toll-free: 0800 311 2756 (Helpline)
    Telephone: 020 7000 1925 (Office)
    E-mail: info@sruk.co.uk
    Website: https://www.sruk.co.uk
  • Scleroderma Foundation
    300 Rosewood Drive, Suite 105
    Danvers, MA 01923
    Toll-free: 1-800-722-4673 (HOPE)
    Telephone: +1-978-463-5843
    Fax: +1-978-463-5809
    E-mail: sfinfo@scleroderma.org
    Website: https://www.scleroderma.org
  • Scleroderma Research Foundation
    220 Montgomery Street, Suite 484
    San Francisco, CA 94104
    Telephone: +1-415-834-9444
    E-mail: info@srfcure.org
    Website: https://srfcure.org/
  • Scleroderma Society of Ontario
    41 King William Street, Suite 202
    Hamilton, ON, L8R 1A2 Canada
    Toll-free: 1-888-776-7776 (Helpline)
    Telephone: +1-905-544-0343
    E-mail: info@sclerodermaontario.ca
    Website: https://www.sclerodermaontario.ca/
  • Steffens Scleroderma Foundation
    PO Box 38037
    Albany, NY 12203
    Website: http://www.steffens-scleroderma.org/

Organizations Providing General Support

  • American Autoimmune Related Diseases Association (AARDA)
    19176 Hall Road, Suite 130
    Clinton Township, MI 48038
    Toll-free: 800-598-4668
    Telephone: 586-776-3900
    Fax: 586-776-3903
    E-mail: aarda@aarda.org
    Website: https://www.aarda.org/
Do you know of an organization? We want to hear from you.

Learn More Learn More


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These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
  • The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. Click on the link to view information on this topic.
  • The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.

Selected Full-Text Journal Articles

  • Select volumes of the Scleroderma Care and Research Journal can be viewed by visiting the Scleroderma Clinical Trials Consortium Web site. Click on the link above to learn more.

GARD Answers GARD Answers


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Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • Is there a recommended diet for people with scleroderma? See answer

  • How might scleroderma be treated? See answer


Have a question? Contact a GARD Information Specialist.

References References


  1. Borigini MJ. Scleroderma. MedlinePlus. 2014; http://www.nlm.nih.gov/medlineplus/ency/article/000429.htm.
  2. Scleroderma. National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). 2010; http://www.niams.nih.gov/Health_Info/Scleroderma/default.asp.
  3. Denton CP. Overview and classification of scleroderma disorders. UpToDate. 2016; http://www.uptodate.com/contents/overview-and-classification-of-scleroderma-disorders.
  4. Localized scleroderma. Orphanet. July, 2010; http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=12000.
  5. Scleroderma. MayoClinic.com. 2008; http://www.mayoclinic.com/print/scleroderma/DS00362/DSECTION=all&METHOD=print.
  6. Denton CP. Overview of the treatment and prognosis of systemic sclerosis (scleroderma) in adults. In: Basow M, ed. UpToDate. Waltham, MA: UpToDate; 2014;
  7. Scleroderma Program. University of Michigan Health System. http://www.med.umich.edu/scleroderma/patients/guidelines.htm.
Do you know of a review article? We want to hear from you.
You can help advance
rare disease research!
You can help advance rare disease research!
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