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Epidermolysis Bullosa

Epidermolysis Bullosa

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Epidermolysis Bullosa 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

  • EB

Disorder Subdivisions

  • epidermolysis bullosa simplex
  • junctional epidermolysis bullosa
  • dystrophic 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.

Resources

Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
16 East 41st Street
3rd Floor
New York, NY 10017
Tel: (212)868-1573
Fax: (212)868-9296
Tel: (866)332-7276
Email: staff@debra.org
Internet: http://www.debra.org

Oley Foundation
214 Hun Memorial MC-28
Albany Medical Center
Albany, NY 12208-3478
USA
Tel: (518)262-5079
Fax: (518)262-5528
Tel: (800)776-6539
Email: dahlr@mail.amc.edu
Internet: http://www.oley.org

Coalition for Heritable Disorders of Connective Tissue (CHDCT)
4301 Connecticut Avenue, NW Suite 404
Washington, DC 20008
Tel: (202)362-9599
Fax: (202)966-8553
Tel: (800)778-7171
Email: chdct@pxe.org
Internet: http://www.chdct.org

DebRA
13 Wellington Business Park
Dukes Ride
Crowthorne
Berkshire United Kingdom
., RG45 6LS
.
Tel: +44 1344 771961
Fax: 44 1344 762661
Email: debra@debra.org.uk
Internet: http://www.debra.org.uk

EB Medical Research Foundation
8909 W. Olympic Blvd. #222
Beverly Hills, CA 90211
Tel: (310)854-0957
Email: a.pett@bep-la.com
Internet: http://www.ebkids.org

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/

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
Internet: http://rarediseases.info.nih.gov/GARD/

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

Epidermolysis Bullosa Action Network
16613 Milan De Avila
Tampa, FL 33613
Tel: (813)325-1955
Email: silvia@ebanusa.org
Internet: http://www.ebanusa.org

Australasian Blistering Diseases Foundation
St. George Hospital,
Department of Dermatology
Gray Street
Kogarah
Sydney, NSW 2217
Australia
Tel: 02 9113 2088
Fax: 02 9113 2886
Email: info@blisters.org.au
Internet: http://www.blisters.org.au/BDHome.html

United Survivors with Epidermolysis Bullosa
512 Hillside Circle
Alpine, UT 84004
Tel: (801)319-0160
Email: ebsurvivors@gmail.com

Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
G/F Wang Lai House
Wang Tau Hom Estate
Kowloon,
Hong Kong
Tel: 852-2794-3010
Fax: 852 2338 4820
Email: mps@hk-mps.com
Internet: http://www.hk-mps.com/en/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  4/28/2009
Copyright  1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1999, 2002, 2005, 2006, 2007, 2008, 2009 National Organization for Rare Disorders, Inc.

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