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Sep. 9, 2016

TOPIC: Patients & Members

September is Children’s Cardiomyopathy Awareness Month

Posted by Jennifer Huron

#KnowYourHeart to Understand Heart Disease in Your Family

By Lisa Yue, Founding Executive Director of Children’s Cardioymyopathy Foundation, a NORD Member Organization

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Lisa Yue, Founding Executive Director of Children’s Cardioymyopathy Foundation

Every week, 25 children in the United States are diagnosed with cardiomyopathy, a chronic and potentially life-threatening heart disease. That equates to the number of students in a standard school classroom. As thousands of children head back to school in September, Children’s Cardiomyopathy Awareness Month gives us the opportunity to talk about the signs, symptoms and risk factors of cardiomyopathy. Being educated and aware can help families and school personnel identify at-risk children and get them the appropriate medical care.

Pediatric cardiomyopathy is a serious heart disease that is often overlooked. According to the National Institutes of Health funded Pediatric Cardiomyopathy Registry, nearly 40 percent of children diagnosed with cardiomyopathy either receive a heart transplant or die. Although two- thirds of cases do not have a known cause, researchers believe that most cardiomyopathies are inherited. More than 60 genetic causes have been identified for cardiomyopathy. Chances are if you have a relative with the disease, other family members may have it and be at-risk.

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Olup Family

The Olup family knows all too well that cardiomyopathy is a family affair. Eleven-year-old Gianna Olup was thought to have a sports-related injury after she was hit in the chest with a lacrosse ball. However, after a more extensive cardiac evaluation, she was found to have cardiomyopathy. The entire Olup family decided to undergo genetic testing and as a result discovered that Gianna’s mom, Kathleen, and her 14-year old sister, Sophia, also have the disease.

According to a recent survey conducted by the Children’s Cardiomyopathy Foundation (CCF), 53 percent of parents with a cardiomyopathy child were not aware of their family’s cardiac health history prior to diagnosis. The first step to determining your family’s risk for inherited cardiomyopathy is to speak to immediate and extended family members. Individuals with cardiomyopathy can be susceptible to dangerous arrhythmias (irregular heartbeat) that can result in sudden cardiac death. Questions to ask family members include: is there any family member who is under the age 50 with a known heart condition, who died of heart disease or suddenly of unknown causes, who has experienced heart related symptoms, or currently exhibits signs of a heart condition.

Symptoms of cardiomyopathy are not always obvious because the disease is extremely variable in its presentation. Common symptoms may include fatigue, feeling light-headed or dizzy, chest pain, shortness of breath, heart palpitations or nausea. In rare cases, a sudden cardiac arrest is unfortunately the first symptom.

For those families who are determined to be at-risk for cardiomyopathy, genetic testing is an option for screening family members. CCF’s educational video, “Know Your Heart: Genetic Testing for Cardiomyopathy Families,” provides families with a basic overview of genetic testing, when it should be considered and how the process works.

As we gear up for another school year and youth sports season, take a moment to understand your family’s cardiac history and cardiomyopathy risk factors and share the information with other parents. During Children’s Cardiomyopathy Awareness Month, we are making the effort to get more at-risk kids diagnosed and properly treated before they suffer a sudden cardiac arrest – the leading cause of death on school property.

For more information on pediatric cardiomyopathy and Children’s Cardiomyopathy Awareness Month, visit the Children’s Cardiomyopathy Foundation’s website for the awareness month at http://www.childrenscardiomyopathy.org/site/awareness-month-2016.php or call 866-808-CURE (2873).

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