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Dystonia

National Organization for Rare Disorders, Inc.

Important

It is possible that the main title of the report Dystonia 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

  • Torsion Dystonia

Disorder Subdivisions

  • Generalized Dystonia
  • Primary Dystonia
  • Early-onset Dystonia
  • Childhood-onset Dystonia
  • Dopa-responsive Dystonia (DRD)
  • Focal Dystonia
  • Blepharospasm (Benign Essential Blepharospasm[BEB])
  • Cervical Dystonia (Spasmodic Torticollis[ST])
  • Oromandibular Dystonia
  • Writer's Cramp
  • Paroxysmal Dystonia
  • Paroxysmal Kinesigenic Dystonia (PKD)
  • Paroxysmal Dystonia Choreathetosis
  • Spasmodic Torticollis (Cervical Dystonia)
  • Spasmodic Dysphonia (SD)
  • X-Linked Dystonia-parkinsonism
  • Late-onset Dystonia
  • Secondary Dystonia
  • Tardive Dyskinesia
  • Tardive Dystonia
  • Myoclonic Dystonia
  • Rapid-onset Dystonia-parkinsonism (RDP)
  • Segmental Dystonia

General Discussion

Dystonia is a group of movement disorders that vary in their symptoms, causes, progression, and treatments. This group of neurological conditions is generally characterized by involuntary muscle contractions that force the body into abnormal, sometimes painful, movements and positions (postures).



Dystonia may be focal (affecting an isolated body part), segmental (affecting adjacent body areas, or generalized (affecting many major muscle groups simultaneously). There are many different causes for dystonia. Genetic as well as non-genetic factors contribute to all forms of dystonia. The most characteristic finding associated with dystonia is twisting, repetitive movements that affect the neck, torso, limbs, eyes, face, vocal chords, and/or a combination of these muscle groups.

Resources

WE MOVE (Worldwide Education and Awareness for Movement Disorders)

5731 Mosholu Avenue

Bronx, NY 10471

USA

Tel: (347)843-6132

Fax: (718)601-5112

Email: wemove@wemove.org

Internet: http://www.wemove.org



National Spasmodic Dysphonia Association

300 Park Boulevard

Suite 415

Itasca, IL 60143

Fax: (630)250-4505

Tel: (800)795-6732

Email: nsda@dysphonia.org

Internet: http://www.dysphonia.org



Dystonia Medical Research Foundation

1 East Wacker Drive, Suite 2810 East Wacker Drive

Suite 2810

Chicago, IL 60601-1905

United States

Tel: (312)755-0198

Fax: (312)803-0138

Tel: (800)377-3978

Email: dystonia@dystonia-foundation.org

Internet: http://www.dystonia-foundation.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/



Dystonia Society

89 Albert Embankment, 2nd Floor

Vauxhall

London, SE1 7TP

United Kingdom

Tel: 08454586211

Fax: 08454586311

Tel: 08454586322

Email: angie@dystonia.org.uk

Internet: http://www.dystonia.org.uk



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/



Spasmodic Torticollis ST/Dystonia, Inc.

PO Box 28

Mukwonago, WI 53149

Tel: (262)560-9534

Fax: (262)560-9535

Tel: (888)445-4588

Email: info@spasmodictorticollis.org

Internet: http://www.spasmodictorticollis.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



Bachmann-Strauss Dystonia & Parkinson Foundation

551 Fifth Avenue

Suite 520

New York, NY 10176

Tel: (212)682-9900

Fax: (212)682-6156

Internet: http://www.dystonia-parkinson.org



Movement Disorder Society

555 E. Wells Street

Suite 1100

Milwaukee, WI 53202-3823

Tel: (414)276-2145

Fax: (414)276-3349

Email: info@movementdisorders.org

Internet: http://www.movementdisorders.org



American Dystonia Society

17 Suffolk Lane

Suite 1

Princeton Junction, NJ 08550

Tel: (310)237-5478

Fax: (609)275-5663

Email: info@dystonia.us

Internet: http://www.dystonia.us



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 MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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:  2/4/2008

Copyright  1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1998, 1999, 2000, 2001, 2002, 2003, 2008 National Organization for Rare Disorders, Inc.

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