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Stevens Johnson Syndrome

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Synonyms of Stevens Johnson Syndrome
  • Dermatostomatitis, Stevens Johnson Type
  • Ectodermosis Erosiva Pluriorificialis
  • Erythema Multiforme Exudativum
  • Erythema Polymorphe, Stevens Johnson Type
  • Febrile Mucocutaneous Syndrome, Stevens Johnson Type
  • Herpes Iris, Stevens-Johnson Type
  • Johnson-Stevens Disease

Disorder Subdivisions



General Discussion
Until recently the relationship of Stevens-Johnson syndrome to other severe blistering disorders was a matter of some debate. Now a consensus seems to be evolving that describes SJS as a rare disorder involving lesions of the mucous membranes along with small blisters on the reddish or purplish, flat, thickened patches of skin. As a result, SJS is now distinguished as a separate disorder from erythema multiforme major (EMM). SJS is now considered to be a less severe variant of toxic epidermal necrolysis (TEN).

SJS and TEN appear to be characterized by identical clinical signs and symptoms, identical treatment approach and identical prognosis. Patients diagnosed with TEN can present with symptoms ranging from 10% skin involvement and severe threat to the patient’s sight to a presentation involving 90% of the skin but only a modest threat to the patient’s sight.

SJS (and TEN) is an inflammatory disorder of the skin triggered by an allergic reaction to certain drugs including antibiotics, such as some sulfonamides, tetracycline, amoxicillin, and ampicillin. In some cases, nonsteroidal anti-inflammatory medications and anticonvulsants, such as Tegretol and phenobarbital have also been implicated. Over-the-counter medications may act as triggers as well. In some cases, it is also possible that the disorder may be traced to a reaction to an infection.

One report suggests that the term SJS be limited to cases in which less than 10% of the total body surface area is involved. The authors suggest that the term TEN be limited to cases in which 30% or more of the total body surface area is involved. The term SJS/TEN Overlap is used to describe patients in whom between 10-30% of the total body surface area involved.
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Organizations related to Stevens Johnson Syndrome
  • Genetic and Rare Diseases (GARD) Information Center
    PO Box 8126
    Gaithersburg MD 20898-8126
    Phone #: 301-251-4925
    800 #: 888-205-2311
    e-mail: ordr@od.nih.gov
    Home page: http://rarediseases.info.nih.gov/Default.aspx
  • MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
    150 Custer Court
    Green Bay WI 54301-1243
    Phone #: 920-336-5333
    800 #: 877-336-5333
    e-mail: mums@netnet.net
    Home page: http://www.netnet.net/mums/
  • Madisons Foundation
    PO Box 241956
    Los Angeles CA 90024
    Phone #: 310-264-0826
    800 #: N/A
    e-mail: getinfo@madisonsfoundation.org
    Home page: http://www.madisonsfoundation.org
  • NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
    1 AMS Circle
    Bethesda MD 20892-3675
    Phone #: 301-495-4484
    800 #: 877-226-4267
    e-mail: NIAMSinfo@mail.nih.gov
    Home page: http://www.niams.nih.gov/Health_Info
  • NIH/National Eye Institute
    Building 31 Rm 6A32
    31 Center Dr MSC 2510
    Bethesda MD 20892-2510
    Phone #: 301-496-5248
    800 #: --
    e-mail: 2020@nei.nih.gov
    Home page: http://www.nei.nih.gov/
  • NIH/National Institute of Allergy and Infectious Diseases
    6610 Rockledge Drive
    MSC 6612
    Bethesda MD 20892-6612
    Phone #: 301-496-5717
    800 #: --
    e-mail: N/A
    Home page: http://www.niaid.nih.gov/
  • Stevens Johnson Syndrome Foundation and Support Group
    PO Box 350333
    Westminster CO 80035-0333
    Phone #: 303-635-1241
    800 #: --
    e-mail: sjsupport@aol.com
    Home page: http://www.sjsupport.org

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Last modified Wednesday, November 26, 2008