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Pediatric Cardiomyopathy

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Pediatric Cardiomyopathy 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

  • arrhythmogenic right ventricular cardiomyopathy (ARVC)
  • asymmetrical septal hypertrophy
  • familial congestive cardiomyopathy
  • familial dilated cardiomyopathy (FDC)
  • hypertrophic obstructive cardiomyopathy (HOCM)
  • idiopathic dilated cardiomyopathy
  • idiopathic hypertrophic subaortic stenosis
  • non-obstructive hypertrophic cardiomyopathy

Disorder Subdivisions

  • arrhythmogenic right ventricular dysplasia (ARVD)
  • dilated cardiomyopathy
  • hypertrophic cardiomyopathy (HCM)
  • restrictive 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.

Resources

American Heart Association
8200 Brookriver Drive
Suite N-100
Dallas, TX 75247
Tel: (214)784-7212
Fax: (214)784-1307
Tel: (800)242-8721
Email: Review.personal.info@heart.org
Internet: http://www.americanheart.org

NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
Internet: http://www.nhlbi.nih.gov/

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

Cardiomyopathy Association
Chiltern Court, Unit 10
Asheridge Road
Chesham
Bucks, Intl HP5 2PX
United Kingdom
Tel: +44 (0)1494 791224
Fax: +44 (0)1494 797199
Tel: 0800 018 1024
Email: info@caridiomyopathy.org
Internet: http://www.cardiomyopathy.org

Hypertrophic Cardiomyopathy Association
328 Green Pond Rd
P.O. Box 306
Hibernia, NJ 07842
USA
Tel: (973)983-7429
Fax: (973)983-7870
Tel: (877)329-4262
Email: support@4hcm.org
Internet: http://www.4hcm.org

Cardiac Arrhythmias Research and Education Foundation, Inc. (C.A.R.E)
427 Fulton Street
P.O. Box 69
Seymour, WI 54165
USA
Tel: (920)833-7000
Fax: (920)833-7005
Tel: (800)404-9500
Email: care@careforhearts.org
Internet: http://www.longqt.org

Kids With Heart ~ National Association for Children's Heart Disorders, Inc.
P.O Box 12504
Green Bay, WI 54307-2504
Tel: (920)498-0058
Fax: (920)498-0058
Tel: (800)538-5390
Email: michelle@kidswithheart.org
Internet: http://www.kidswithheart.org

Little Hearts, Inc.
P.O. Box 171
110 Court Street, Suite 3A
Cromwell, CT 06416
USA
Tel: (860)635-0006
Fax: (860)635-0006
Tel: (866)435-4673
Email: info@littlehearts.org
Internet: http://www.littlehearts.org

Congenital Heart Information Network (C.H.I.N.)
101 N Washington Ave, Suite 1A
Margate City, NJ 08402-1195
Tel: (609)822-1572
Fax: (609)822-1574
Email: mb@tchin.org
Internet: http://www.tchin.org

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

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/

Irish Heart Foundation
4 Clyde Road
Ballsbridge
Dublin, 4
Ireland
Tel: +353 1 6685001
Fax: +353 1 6685896
Email: info@irishheart.ie
Internet: http://www.irishheart.ie

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 www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

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:  8/26/2010
Copyright  2003, 2010 National Organization for Rare Disorders, Inc.

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