Sudden Cardiac Arrest Foundation Partners with Children’s Cardiomyopathy Foundation to Call Attention to Children’s “Silent” Heart Disease

Sudden Cardiac Arrest Foundation Partners with Children’s Cardiomyopathy Foundation to Call Attention to Children’s “Silent” Heart Disease

Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart to Learn Risk Factors

PITTSBURGH, PA--All too often, we read a headline of a star athlete who suddenly collapses on the night of the big game, or a baby who dies in her sleep. Chances are, a little-known heart condition is the cause. The Sudden Cardiac Arrest Foundation is partnering with the Children’s Cardiomyopathy Foundation (CCF) for Children’s Cardiomyopathy Awareness Month this September to shine a spotlight on pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease.

Cardiomyopathy is the leading cause of sudden deaths and heart transplants in children under the age of 18. Many times, it is “silent” in its symptoms and not diagnosed until after a tragedy occurs. Children’s Cardiomyopathy Awareness Month calls public attention to the signs, symptoms and risk factors for cardiomyopathy, which will help identify more undiagnosed, at-risk children and get them the appropriate medical attention to prevent premature death.

"I believe knowledge of the disease and evaluating a family’s cardiac health can help save lives," said Lisa Yue, the founding executive director of CCF who lost two young children to cardiomyopathy. “We appreciate the Sudden Cardiac Arrest Foundation’s support of Children’s Cardiomyopathy Awareness Month, and we encourage the public to get involved in raising awareness of pediatric cardiomyopathy not only in September but year round.”

“We are pleased to partner with the Children’s Cardiomyopathy Foundation on this awareness initiative and hope to educate others on the signs, symptoms and risk factors for cardiomyopathy. This September we urge physicians, nurses, coaches, teachers and community leaders to join us in raising awareness of pediatric cardiomyopathy,” adds Mary Newman, president of the Sudden Cardiac Arrest Foundation.

It is estimated that more than 30,000 children are living with cardiomyopathy in the U.S. The Sudden Cardiac Arrest Foundation will celebrate the awareness month with #KnowYourHeart educational activities such as circulating pediatric cardiomyopathy facts, warning signs and risk factors, and urging the public to learn about their cardiac family history. For more information visit www.sca-aware.org and www.childrenscardiomyopathy.org.


10 Things to Know About Pediatric Cardiomyopathy

  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 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 another form.
  3. Cardiomyopathy is a leading cause of sudden cardiac arrest in young people. Every year, approximately 7,000 children under the age of 18 in the United States will have a sudden cardiac arrest. SCA is the top cause of death on school property. Only 10.7 percent of students who suffer a cardiac arrest survive.
  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. Currently there is no cure. While there are surgical and medical treatments that may improve quality of life, the damaged heart cannot be repaired in most cases. A heart transplant may be necessary if the heart continues to weaken and medical management is unable to prevent the heart from failing.
  9. Knowing your family cardiac history is essential in preventing premature death. 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.

 

Mission & Vision

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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