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.
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Resources

WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 West 84th Street
New York, NY 10024
USA
Tel: (212)875-8312
Fax: (212)875-8389
Email: wemove@wemove.org
Internet: http://www.wemove.org

National Spasmodic Dysphonia Association
300 Park Boulevard
Suite 301
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
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

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/

Dystonia Society
89 Albert Embankment, 1st Floor
Vauxhall
London, Intl SE1 7TP
United Kingdom
Tel: 0845 458 6211
Fax: 0845 458 6311
Tel: 0845 458 6322
Email: angie@dystonia.org.uk
Internet: http://www.dystonia.org.uk

Organization For Anti-Convulsant Syndrome
PO Box 772
Pilling
Preston, Intl PR3 6WW
UK
Tel: 01253 790000
Fax: 01253 790000
Email: Janet.oacs@btinternet.com
Internet: http://www.oacs-uk.co.uk/

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

Spasmodic Torticollis 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

American Association of Neurological Surgeons
5550 Meadowbrook Drive
Rolling Meadows, IL 60008-3852
Tel: (847)378-0500
Fax: (847)378-0600
Tel: (888)566-2267
Email: info@aans.org
Internet: http://www.NeurosurgeryToday.org and http://www.aans.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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