Synonyms

• Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)
• Asymmetrical Septal Hypertrophy
• Familial Congestive Cardiomyopathy
• Familial Dilated Cardiomyopathy (FDC)
• Hypertrophic Obstructive Cardiomyopathy (HOCM)
• Idiopathic Hypertrophic Subaortic Stenosis
• Idiopathic Dilated Cardiomyopathy
• Non-obstructive Hypertrophic Cardiomyopathy

Disorder Subdivisions

• Arrhythmogenic Right Ventricular Dysplasia (ARVD)
• Hypertrophic Cardiomyopathy (HCM)
• Restrictive Cardiomyopathy
• Dilated Cardiomyopathy

General Discussion

Pediatric cardiomyopathy is a rare heart condition that affects infants and children. Specifically, cardiomyopathy means disease of the heart muscle (myocardium). Several different types of cardiomyopathy exist and the specific symptoms vary from case to case. In some cases, no symptoms may be present (asymptomatic); in many cases, cardiomyopathy is a progressive condition that may result in an impaired ability of the heart to pump blood; fatigue; heart block; irregular heartbeats (tachycardia); and, potentially, heart failure and sudden cardiac death.

Cardiomyopathy may be termed ischemic or nonischemic. Ischemic cardiomyopathy refers to cases that occur due to a lack of blood flow and oxygen (ischemia) to the heart. Such cases often result from hardening of the arteries (coronary artery disease). Nonischemic cardiomyopathy refers to cases that occur due to structural damage or malfunction of the heart muscle. Nearly all cases of pediatric cardiomyopathy are nonischemic. This report deals with nonischemic pediatric cardiomyopathy.

Cardiomyopathy may also be termed primary or secondary. Primary cardiomyopathy refers to cases where cardiomyopathy occurs by itself or for unknown reasons (idiopathic). Secondary cardiomyopathy refers to cases where the disease occurs secondary to a known cause such as heart muscle inflammation (myocarditis) caused by viral or bacterial infections; exposure to certain toxins such as heavy metals or excessive alcohol use; or certain disorders that affect the heart and/or additional organs systems. According to the Pediatric Cardiomyopathy Registry, approximately 79 percent of pediatric cardiomyopathy cases occur for unknown reasons (idiopathic).

Nonischemic cardiomyopathy may be further divided into four subtypes based upon the specific changes within the heart. These subtypes are: dilated, hypertrophic, restrictive and arrhythmogenic right ventricular dysplasia.
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Resources

American 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

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.govMontgomery Heart Foundation for Cardiomyopathy
1830 E. Monument St./Suite 7300
Baltimore
MD
21205
Tel: (402)502-2578
Fax: (443)287-4109
njohnso5@jhmi.edu
http://www.hopkinsmedicine.org/cardiomyopathy/

Cardiomyopathy Association
40 The Metro Centre
Tolpits Lane
Watford
Hertfordshire
Intl
WD1 8SB
United Kingdom
Tel: 01441923249977
Fax: 01441923249987
info@caridiomyopathy.org
http://www.cardiomyopathy.org

Hypertrophic Cardiomyopathy Association of America
P.O. Box 306
Hibernia
NJ
07842
USA
Tel: (973)983-7429
Fax: (973)983-7870
800: (877)329-4262
support@4hcm.org
http://www.4hcm.org

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
800: (800)404-9500
care@longqt.org
http://www.longqt.org/

Kids With Heart National Association for Children's Heart Disorders, Inc.
1578 Careful Dr
Green Bay
WI
54304-2941
Tel: (920)498-0058
Fax: (920)498-0058
800: (800)538-5390
kidswithheart@greenbaynet.com
http://www.kidswithheart.org

Little Hearts, Inc.
P.O. Box 171
Cromwell
CT
06416
USA
Tel: (860)635-0006
Fax: (860)635-0006
800: (866)435-4673
info@littlehearts.org
http://www.littlehearts.org

Congenital Heart Information Network
1561 Clark Dr
Yardley
PA
19067
Tel: (215)493-3068
Fax: (215)493-3068
mb@tchin.org
http://www.tchin.org

Children's Cardiomyopathy Foundation (CCF)
PO Box 547
Tenafly
NJ
07670
USA
Tel: (866)808-2873
Fax: (201)227-7016
info@childrenscardiomyopathy.org
http://www.childrenscardiomyopathy.org

HOPE (The Heart of Pediatric Electrophysiology)
PO Box 519
Park Ridge
NJ
07565
Tel: (201)505-9383
Fax: (201)505-0920
800: (877)394-4673
info@heartbeatsofhope.org, info@timothysyndrome.org
http://www.heartbeatsofhope.org; http://www.timothysyndrome.org

Irish Heart Foundation
4 Clyde Road
Ballsbridge, Dublin
4
Ireland
Tel: 01 6685001
Fax: 01 6685896
info@irishheart.ie
http://www.irishheart.ie

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:  4/18/2008
Copyright  2003National Organization for Rare Disorders, Inc.