Distal Myopathy

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Distal Myopathy 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

  • Distal Muscular Dystrophy

Disorder Subdivisions

  • Distal Myopathy with Rimmed Vacuoles (DMRV)
  • Distal Myopathy with Vocal Cord and Pharyngeal Signs
  • Distal Myopathy 3 (MPD3)
  • Inclusion Body Myopathy Type 2 (IBM2)
  • Laing Distal Myopathy
  • Laing Early-Onset Distal Myopathy
  • Miyoshi Myopathy
  • Nonaka Myopathy
  • Tibial Distal Myopathy
  • Udd Distal Myopathy
  • Welander Distal Myopathy

General Discussion

Distal myopathy (or distal muscular dystrophy) is a general term for a group of rare progressive genetic disorders characterized by wasting (atrophy) and weakness of the voluntary distal muscles. The distal muscles are those farther from the center of the body and include the muscles of the lower arms and legs and the hands and feet. Conversely, the proximal muscles are the muscles closest to the center of the body such as the muscles of the shoulder, pelvis, and upper arms and legs. Although age of onset can occur anytime from infancy to adulthood, most forms develop later in life and are slowly progressive. Inheritance is autosomal dominant or recessive.

The distal myopathies belong to a larger group of disorders known as the muscular dystrophies. The muscular dystrophies are characterized by weakness and degeneration of various voluntary muscles of the body. Approximately 30 different disorders make up the muscular dystrophies. The disorders affect different muscles and have different ages of onset, severity and inheritance patterns.

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

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, 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

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
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

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: info@mda.org.nz
Internet: http://www.mda.org.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
75 Lucan Road
Chapelized
Dublin 20
Intl
Ireland
Tel: 353(1)6236414
Fax: 353 (1) 6208663
Email: info@mdi.ie
Internet: http://www.mdi.ie/

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/

Jain Foundation Inc.
2310 130th Avenue NE
Suite B101
Bellevue, WA 98005
Tel: (425)882-1492
Fax: (240)282-0510
Email: plavimittal@jain-foundation.org
Internet: http://www.jain-foundation.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:  4/6/2007
Copyright  2007 National Organization for Rare Disorders, Inc.

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