Jervell and Lange-Nielsen Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Jervell and Lange-Nielsen Syndrome 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

  • Cardioauditory Syndrome of Jervell and Lange-Nielsen
  • Cardioauditory Syndrome
  • Deafness, Congenital, and Functional Heart Disease
  • Surdocardiac Syndrome
  • Autosomal Recessive Long QT Syndrome

Disorder Subdivisions

  • None

General Discussion

Jervell and Lange-Nielsen syndrome is a rare inherited disorder characterized by deafness present at birth (congenital) occurring in association with abnormalities affecting the electrical system of the heart. The severity of cardiac symptoms associated with Jervell and Lange-Nielsen syndrome varies from case to case. Some individuals may have no apparent symptoms (asymptomatic); others may develop abnormally increased heartbeats (tachyarrhythmias) resulting in episodes of unconsciousness (syncope), cardiac arrest, and potentially sudden death. Physical activity, excitement or stress may trigger the onset of these symptoms. Jervell and Lange-Nielsen syndrome is usually detected during early childhood and is inherited as an autosomal recessive trait.
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Resources

International Long QT Syndrome Registry
P.O. Box 653
University of Rochester Medical Center
Rochester, NY 14642-8653
Tel: (585)276-0016
Fax: (585)273-5283

Deafness Research Foundation
641 Lexington Avenue, Fl 15
New York, NY 10022-4503
United States
Tel: (212)328-9480
Fax: (212)328-9484
Tel: (866)454-3924
TDD: (888)435-6104
Email: jpizarro@drf.org/
Internet: http://www.drf.org/

American Heart Association
7272 Greenville Avenue
Dallas, TX 75231-4596
Tel: (214)373-6300
Fax: (214)373-0268
Tel: (800)242-8721
Email: Review.personal.info@heart.org
Internet: http://www.americanheart.org

Sudden Arrhythmia Death Syndromes Foundation
508 E South Temple #20
Salt Lake City, UT 84102
USA
Tel: (801)531-0937
Fax: (801)531-0945
Tel: (800)786-7723
Email: sads@sads.org
Internet: http://www.sads.org

Deaf Communications Institute
P.O. Box 247
Fayville, MA 01745
Tel: (617)872-9496

EAR (Education and Auditory Research Foundation
P.O. Box 330867
Nashville, TN 37203
Tel: (615)627-2724
Tel: (800)545-4327
TDD: (615)284-7849
Email: suzanne@earfoundation.org
Internet: http://www.earfoundation.org

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

Cardiac Arrhythmias Research and Education Foundation, Inc.
26425 NE Allen Street #103
P.O. Box 369
Duvall, WA 98019
USA
Tel: (425)788-1987
Fax: (425)788-1927
Tel: (800)404-9500
Email: care@longqt.org
Internet: http://www.longqt.org/

European Long QT Syndrome Information Center
Ronnerweg 2
Nidau, Intl 2560
Switzerland
Tel: 0041794741535
Email: info@qtsyndrome.ch
Internet: http://www.qtsyndrome.ch/index.html

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

American Academy of Audiology
11730 Plaza America Drive, Suite 300
Reston, VA 20190
Tel: (703)790-8466
Fax: (703)790-8631
Tel: (800)222-2336
Email: infoaud@audiology.org
Internet: http://www.audiology.org

Fetal Hope Foundation
9786 S Holland Street
Littleton, CO 80127
USA
Tel: (303)932-0553
Tel: (877)789-4673
Email: info@fetalhope.org
Internet: http://www.fetalhope.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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