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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

7272 Greenville Avenue

Dallas, TX 75231

Tel: (214)784-7212

Fax: (214)784-1307

Tel: (800)242-8721

Email: Review.personal.info@heart.org

Internet: http://www.heart.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 Rd Ind

Chesham, HP5 2PX

United Kingdom

Tel: 4401494791224

Fax: 4401494797199

Tel: 08000181024

Email: info@cardiomyopathy.org

Internet: http://www.cardiomyopathy.org



Hypertrophic Cardiomyopathy Association

322 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

Fax: (920)833-7005

Tel: (800)404-9500

Email: care@careforhearts.org

Internet: http://www.longqt.org or http://www.careforhearts.org



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

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.)

P.O. Box 3397

Margate City, NJ 08402-0397

Tel: (609)823-4507

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: 35316685001

Fax: 35316685896

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 MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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:  2/7/2013

Copyright  2003, 2010, 2013 National Organization for Rare Disorders, Inc.

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