Facioscapulohumeral Muscular Dystrophy

National Organization for Rare Disorders, Inc.

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)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

FSH Society, Inc.
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 E. Sunrise Dr
Tucson, AZ 85718
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, Intl M4P 2E5
Canada
Tel: 416-488-0030
Fax: 416-488-7523
Tel: (866)-MUSCLE-8
Email: info@muscle.ca
Internet: http://www.muscle.ca

Muscular Dystrophy Campaign
61 Southwark Street
London, SE1 0HL
United Kingdom
Tel: 020 7803 4800
Email: info@muscular-dystrophy.org
Internet: http://www.muscular-dystrophy.org

National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

Society for Muscular Dystrophy Information International
P.O. Box 7490
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 16-238,
Sandringham
Auckland,
New Zealand
Tel: (09) 815 0247
Fax: 09 2777540
Tel: 0800800337
Email: nzmda@nzmda.ak.planet.gen.nz

Muscular Dystrophy Australia
111 Boundary Road North
Melbourne, Intl VIC 3051
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
Tel: 353 (1) 8721501
Email: info@mdi.ie
Internet: http://www.mdi.ie/

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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

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, 4120
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: (800)263-5430
Email: jstone@childneurologyfoundation.org
Internet: http://www.childneurologyfoundation.org

For a Complete Report

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

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