Degos Disease

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Degos Disease is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Degos Syndrome
  • Degos-Kohlmeier Disease
  • Kohlmeier-Degos Disease
  • Malignant Atrophic Papulosis

Disorder Subdivisions

  • None

General Discussion

Degos disease is a rare systemic disorder that affects small and medium sized arteries, causing them to become blocked (occlusive arteriopathy). Degos disease usually progresses through two stages. During the first stage, characteristic skin lesions appear that may last for a period of time ranging from weeks to years. The second stage of Degos disease is most frequently characterized by lesions in the small intestine, but other organs may also be affected. Major symptoms may include abdominal pain, diarrhea, and/or weight loss. Intestinal lesions may break through the wall of the bowel (perforation), a potentially life-threatening complication. The exact cause of Degos disease is unknown.
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Resources

Digestive Disease National Coalition
507 Capitol Court, NE
Suite 200
Washington, DC 20002
Tel: (202)544-7497
Fax: (202)546-7105
Email: ddnc@hmcw.org
Internet: http://www.ddnc.org

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Degos Patients' Support Network
28 Glenville Road
Rustington, West Sussex, BN16 2EA
United Kingdom
Tel: 44 1903 787737
Fax: +44 1903 772 954
Email: judith@degosdisease.com
Internet: http://www.degosdisease.com

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

For a Complete Report

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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