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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, 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/



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/



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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