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Facioscapulohumeral Muscular Dystrophy

Important
It is possible that the main title of the report Facioscapulohumeral Muscular Dystrophy 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

  • Facio-Scapulo-Humeral Dystrophy
  • FSH
  • FMD
  • FSHD
  • Muscular Dystrophy, Facioscapulohumeral
  • Muscular Dystrophy, Landouzy Dejerine

Disorder Subdivisions

  • Infantile Facioscapulohumeral Muscular Dystrophy

General Discussion

Facioscapulohumeral muscular dystrophy (FSHD), also known as Landouzy-Dejerine muscular dystrophy, is a neuromuscular disorder. Symptom onset usually occurs in adolescence or early adulthood; however, less commonly, symptoms may become apparent as early as infancy or early childhood.

The disorder is typically initially characterized by weakness of facial, shoulder, and/or upper arm muscles. Associated abnormalities may include an impaired ability to completely close the eyes, limited movements of the lips, and difficulties raising the arms over the head. Affected individuals may also eventually develop weakness and associated wasting (atrophy) of muscles of the hips and thighs and/or involvement of lower leg muscles.

Although the disease course may be variable, FSHD is most typically characterized by relatively slow disease progression. Specific symptoms and findings may also vary in range and severity, including among affected members of the same family (kindred).

FSHD is usually inherited as an autosomal dominant trait. However, in up to approximately 30 percent of affected individuals, there is no apparent family history of the disorder. In some of these cases, FSHD may be due to new genetic changes (mutations) that appear to occur spontaneously for unknown reasons (sporadically).

Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

FSH Society, Inc.
BBRI R353
64 Grove Street
Watertown, MA 02472
Tel: (617)658-7878
Fax: (617)658-7879
Email: info@fshsociety.org
Internet: http://www.fshsociety.org

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
USA
Tel: (520)529-2000
Fax: (520)529-5300
Tel: (800)572-1717
Email: mda@mdausa.org
Internet: http://www.mda.org/

Muscular Dystrophy Canada
2345 Yonge Street Suite 900
Toronto
Ontario, M4P 2E5
Canada
Tel: 4164880030
Fax: 4164887523
Tel: 866MUSCLE8
Email: info@muscle.ca
Internet: http://www.muscle.ca

Muscular Dystrophy Campaign
61 Southwark Street
London, SE1 0HL
United Kingdom
Tel: 02078034800
Email: info@muscular-dystrophy.org
Internet: http://www.muscular-dystrophy.org

NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Internet: http://www.ninds.nih.gov/

Society for Muscular Dystrophy Information International
P.O. Box 7490
Bridgewater
Nova Scotia, B4V 2X6
Canada
Tel: 9026853961
Fax: 9026853962
Email: smdi@auracom.com
Internet: http://www.nsnet.org/smdi/

Muscular Dystrophy Association of New Zealand, Inc.
PO Box 16-238
Sandringham
Auckland,
New Zealand
Tel: 098150247
Fax: 092777540
Tel: 0800800337
Email: info@mda.org.nz
Internet: http://www.mda.org.nz/

Muscular Dystrophy Australia
111 Boundary Road
North Melbourne
VIC 3051
Australia
Tel: 61393209555
Fax: 61393209595
Tel: 1800656632
Email: info@mda.org.au
Internet: http://www.mda.org.au

European Alliance of Neuromuscular Disorders Associations
MDG Malta 4
Gzira Road
Gzira, GAR 04
Malta
Tel: 0035621346688
Fax: 0035621318024
Email: eamda@hotmail.com
Internet: http://www.eamda.net

Muscular Dystrophy Ireland
75 Lucan Road
Chapelized
Dublin 20
Ireland
Tel: 016236414
Fax: 016208663
Email: info@mdi.ie
Internet: http://www.mdi.ie/

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
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

Spina Bifida Hydrocephalus Queensland
PO Box 8022
Woolloongabba
Queensland, 4102
Australia
Tel: (07) 3844 4600
Fax: (07) 3844 4601
Email: info@sbhqueensland.org.au
Internet: http://www.spinabifida.org

Child Neurology Foundation
2000 West 98th Street
Bloomington, MN 55431
USA
Tel: (952)641-6100
Fax: (952)881-6276
Tel: (877)263-5430
Email: jstone@childneurologyfoundation.org
Internet: http://www.childneurologyfoundation.org

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:  9/17/2007
Copyright  1992, 1996, 1997, 1998, 1999, 2000, 2002, 2003, 2007 National Organization for Rare Disorders, Inc.

WebMD Medical Reference from the National Organization of Rare Disorders

Last Updated: February 25, 2014
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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