Epidermolysis Bullosa / Disease

Diseases & Conditions

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Epidermolysis Bullosa

Synonyms of Epidermolysis Bullosa

Disorder Subdivisions

dystrophic epidermolysis bullosa
epidermolysis bullosa simplex
junctional epidermolysis bullosa

General Discussion
Epidermolysis bullosa (EB) is a genetic skin disorder characterized clinically by blister formation from mechanical trauma. There are three main types with additional sub-types identified. There is a spectrum of severity, and within each type, one may be either mildly or severely affected. EB ranges from being a minor inconvenience requiring modification of some activities, to being completely disabling and, in some cases, fatal.

Friction causes blister formation. Blisters can form anywhere on the surface of the skin, within the oral cavity and in more severe forms may also involve the external surface of the eye, as well as the respiratory, gastrointestinal and genitourinary tracts. In some forms of the disease, disfiguring scars and disabling musculoskeletal deformities occur.

Currently, there is no cure for EB. Supportive care includes daily wound care, bandaging, and pain management as needed

Organizations related to Epidermolysis Bullosa

DebRA-United Kingdom
DEBRA House
Berkshire None RG45 6LS
Phone #: +44- 13-44 771961
800 #: --
e-mail: admin@debra.org.uk
Home page: http://www.debra.org.uk
Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
16 East 41st Street
New York NY 10017
Phone #: 212-868-1573
800 #: 866-332-7276
e-mail: staff@debra.org
Home page: http://www.debra.org
EB Medical Research Foundation
130 Sandringham Rd., Piedmont, CA 94611 or
None None None
Phone #: 510--53-0-9600/310-854-0957
800 #: --
e-mail: ebmrf@comcast.net
Home page: http://www.ebkids.org
Epidermolysis Bullosa Action Network (EBAN, Inc.)
16613 Milan De Avila
Tampa FL 33613
Phone #: 813-325-1955
800 #: N/A
e-mail: silvia@ebanusa.org
Home page: http://www.ebanusa.org
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

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