10 Things to Know About Pediatric Cardiomyopathy

10 Things to Know About Pediatric Cardiomyopathy

September is Pediatric Cardiomyopathy Awareness Month. Here are some helpful things to know about this lifethreatening condition.

1. Cardiomyopathy is a chronic disease of the heart muscle that affects the heart’s ability to pump blood. The disease can present in different forms and may, in severe cases, lead to heart failure and/or sudden death.

2. There are five different forms of cardiomyopathy. The World Health Organization recognizes four forms: dilated (DCM); hypertrophic (HCM); restrictive (RCM); and arrhythmogenic right ventricular (ARVC) cardiomyopathy. Left ventricular non-compaction cardiomyopathy (LVNC) increasingly is being recognized as a fifth form.

3. Cardiomyopathy is a leading cause of sudden cardiac arrest in young people. The Centers for Disease Control and Prevention has estimated that every year, approximately 2,000 people younger than 25 will die of sudden cardiac arrest (SCA) in the United States. SCA is the top cause for death on school property.

4. Cardiomyopathy remains the leading cause of heart transplants in children over one year of age. Cardiomyopathies result in some of the worst pediatric cardiac outcomes, with nearly 40 percent of children with symptoms receiving a heart transplant or dying.

5. Cardiomyopathy can affect any child. Cardiomyopathy can occur in any child regardless of age, race, gender or socioeconomic background.

6. There is tremendous variation in symptoms among the different types of cardiomyopathy. Common symptoms include difficulty breathing, fatigue, exercise intolerance, fainting, dizziness or light-headedness, chest pain, heart palpitations, and swelling in the ankles, feet, legs, abdomen and veins in the neck.

7. Cardiomyopathy can be inherited genetically or acquired through a viral infection or cancer chemotherapy. Not all is understood about the genetic and molecular mechanism of the disease in children, and up to 75 percent of those diagnosed do not have a known disease cause.

8. There is no cure for the disease.  While there are surgical and medical treatments that may improve quality of life, there is no cure to repair the damaged heart or stop the progression of the disease. Ultimately, a heart transplant may be necessary if heart failure worsens.

9. Knowing your family cardiac history is essential to preventing premature death.  There is no low-cost diagnostic test that can quickly detect all forms of cardiomyopathy.  A discussion of your family’s heart health with a geneticist, cardiologist or pediatrician can help assess your child’s risk for cardiomyopathy.

10. Many children with cardiomyopathy have activity restrictions and psychosocial issues related to living with a chronic illness.  A diagnosis usually results in more frequent doctor visits, daily cardiac medication and possibly surgical interventions. Other modifications include dietary adjustments, restriction from competitive and contact sports, and school accommodations.

For more information contact: Sheila Gibbons, Director of Development and Communication, Children’s Cardiomyopathy Foundation, Tel: 866-808-CURE, ext. 902, Email: sgibbons [at] childrenscardiomyopathy [dot] orgwww.childrenscardiomyopathy.org

SOURCE: Children's Cardiomyopathy Foundation

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The mission of the Sudden Cardiac Arrest (SCA) Foundation is to prevent death and disability from sudden cardiac arrest. The vision of the SCA Foundation is to increase awareness about sudden cardiac arrest and influence attitudinal and behavioral changes that will reduce mortality and morbidity from SCA.

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