Pediatric Cardiomyopathy

National Organization for Rare Disorders, Inc.

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Important
It is possible that the main title of the report Pediatric Cardiomyopathy is not the name you expected.

Disorder Subdivisions

  • None

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 person to person. In some affected individuals, no symptoms may be present (asymptomatic); in many people, 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 a lack of blood flow and oxygen (ischemia) to the heart and this often results from hardening of the arteries (coronary artery disease). Nonischemic cardiomyopathy refers to structural damage or malfunction of the heart muscle. Nearly all patients with pediatric cardiomyopathy have the nonischemic type. This report deals with nonischemic pediatric cardiomyopathy.

Cardiomyopathy may also be termed primary or secondary. Primary cardiomyopathy occurs by itself or for unknown reasons (idiopathic). Secondary cardiomyopathy 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 in addition to additional organ systems. According to the Pediatric Cardiomyopathy Registry, approximately 79 percent of pediatric cardiomyopathy is idiopathic.

Cardiomyopathy has traditionally been divided into three basic subtypes based upon the specific changes within the heart. These subtypes are: dilated, hypertrophic, and restrictive. There are several other less common forms such as arrhythmogenic right ventricular dysplasia, noncompaction, and others where it is controversial whether they are subtypes of the three principle forms or should be considered as completely different diseases.

Supporting Organizations

American Heart Association

7272 Greenville Avenue
Dallas, TX 75231
Tel: (214)784-7212
Fax: (214)784-1307
Tel: (800)242-8721
Email: Review.personal.info@heart.org
Website: http://www.heart.org

Cardiomyopathy Association

Chiltern Court, Unit 10
Asheridge Rd Ind
Chesham, HP5 2PX
United Kingdom
Tel: 4401494791224
Fax: 4401494797199
Tel: 8000181024
Email: info@cardiomyopathy.org
Website: http://www.cardiomyopathy.org

Children's Cardiomyopathy Foundation

PO Box 547
Tenafly, NJ 7670
USA
Tel: (866)808-2873
Fax: (201)227-7016
Email: info@childrenscardiomyopathy.org
Website: http://www.childrenscardiomyopathy.org

Congenital Heart Information Network (C.H.I.N.)

P.O. Box 3397
Margate City, NJ 08402-0397
Tel: (609)823-4507
Fax: (609)822-1574
Email: mb@tchin.org
Website: http://www.tchin.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
Website: http://rarediseases.info.nih.gov/GARD/

Hypertrophic Cardiomyopathy Association

18 East Main St.
Suite 202
Denville, NJ 07834
USA
Tel: 973-983-7429
Fax: (973)983-7870
Tel: (877)329-4262
Email: support@4hcm.org
Website: http://www.4hcm.org

Irish Heart Foundation

50 Ringsend Road
Dublin, D04 T6X0
Ireland
Tel: 35316685001
Fax: 35316685896
Email: info@irishheart.ie
Website: http://www.irishheart.ie

Kids With Heart ~ National Association for Children's Heart Disorders, Inc.

1578 Careful Dr.
Green Bay, WI 54304
Tel: (920)498-0058
Fax: (920)498-0058
Tel: (800)538-5390
Email: michelle@kidswithheart.org
Website: http://www.kidswithheart.org

Little Hearts, Inc.

P.O. Box 171
110 Court Street, Suite 3A
Cromwell, CT 6416
USA
Tel: (860)635-0006
Fax: (860)635-0006
Tel: (866)435-4673
Email: info@littlehearts.org
Website: http://www.littlehearts.org

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
Website: http://www.hopkinsmedicine.org/heart_vascular_institute/

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
Website: http://www.nhlbi.nih.gov/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.

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.

Last Updated:  4/6/2016
Copyright  2016 National Organization for Rare Disorders, Inc.