Information and Resources
Jervell and Lange-Nielsen Syndrome
Important
It is possible that the main title of the report Jervell and Lange-Nielsen Syndromeis not the name you expected.
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)273-5283Deafness Research Foundation
8201 Greensboro Drive
Third Floor
McLean
VA
22102
United States
Tel: (703)610-9025
Fax: (703)610-9005
800: (800)829-5934
drf@drf.orgAmerican Heart Association
National Center
7272 Greenville Avenue
Dallas
TX
75231-4596
Tel: (214)373-6300
Fax: (214)373-0268
800: (800)242-8721
inquire@heart.org
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
800: (800)786-7723
sads@sads.org
http://www.sads.org
Deaf Communications Institute
P.O. Box 247
Fayville
MA
01745
Tel: (617)872-9496EAR (Education and Auditory Research) Foundation
P.O. Box 330867
Nashville
TN
37203
Tel: (615)627-2724
800: (800)545-4327
TDD: (615)284-7849
suzanne@earfoundation.org
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
nhlbiinfo@rover.nhlbi.nih.govCardiac 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
800: (800)404-9500
care@longqt.org
http://www.longqt.org/
European Long QT Syndrome Information Center
Web Site on the Internet
Ronnerweg 2
Nidau
Intl
2560
Switzerland
Tel: 0041794741535
info@qtsyndrome.ch
http://www.qtsyndrome.ch
American Academy of Audiology
11730 Plaza America
#300
Reston
VA
20190
Tel: (703)790-8466
Fax: (703)790-8631
800: (800)222-2336
info@audiology.org
http://www.audiology.org
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
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: 5/5/2008
Copyright 1991, 1996, 1997, 2003 National Organization for Rare Disorders, Inc.
WebMD Medical Reference from the National Organization of Rare Disorders
