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 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
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

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

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.
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/

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 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 (CCF)
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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

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

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

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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