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).
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Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

FSH Society, Inc.
3 Westwood Road
Lexington, MA 02420
Tel: (781)860-0501
Fax: (781)860-0599
Email: carol.perez@fshsociety.org
Internet: http://www.fshsociety.org

Muscular Dystrophy Association
3300 E. Sunrise Dr
Tucson, AZ 85718
USA
Tel: 5205292000
Fax: 5205295300
Tel: 8003444863
Email: mda@mdausa.org
Internet: http://www.mdausa.org

Muscular Dystrophy Association of Canada
900-2345 Yonge Street
Toronto
Ontario, Intl M4P 2E5
Canada
Tel: 416-488-0030
Fax: 416-488-7523
Tel: (866)-MUSCLE-8
Email: info@mdac.ca
Internet: http://www.mdac.ca

Muscular Dystrophy Campaign
7-11 Prescott Place
London, SW4 6BS
United Kingdom
Email: info@muscular-dystrophy.org
Internet: http://www.muscular-dystrophy.org

National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Email: braininfo@ninds.nih.gov
Internet: http://www.ninds.nih.gov/

Society for Muscular Dystrophy Information International
P.O. Box 4790
Bridgewater
Nova Scotia, B4V 2X6
Canada
Tel: 902-685-3961
Fax: 902-685-3962
Email: smdi@auracom.com
Internet: http://users.auracom.com/smdi

Muscular Dystrophy Association of New Zealand, Inc.
PO Box 23-047
Papatoetoe
Auckland,
New Zealand
Tel: 09 2787216
Fax: 09 2777540
Tel: 0800800337
Email: nzmda@nzmda.ak.planet.gen.nz

Muscular Dystrophy Association (Australia)
GPO Box 9932
Melbourne, Intl 3001
Australia
Tel: 61 3 9320 9555
Fax: 61 3 9320 9595
Tel: 1 800 656 632
Email: info@mda.org.au
Internet: http://www.mda.org.au

European Alliance of Neuromuscular Disorders Associations
MDG Malta 4,
Gzira Road
Gzira, Intl GAR 04
Malta
Tel: 00356 21 346688
Fax: 00356 21 318024
Email: eamda@hotmail.com
Internet: http://www.eamda.net

Muscular Dystrophy Ireland
71/72 North Brunswich Street
Dublin 7, Intl
Ireland
Tel: 353 1 8721501
Fax: 353 1 8724482
Email: info@mdi.ie
Internet: http://www.mdi.ie/

Spina Bifida Hydrocephalus Queensland
PO Box 8022
Woolloongabba, Queensland, 4120
Australia
Tel: (07) 3844 4600
Fax: (07) 3844 4601
Email: info@sbhqueensland.org.au
Internet: http://www.spinabifida.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

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.

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