Lisa Yue

September is Children’s Cardiomyopathy Awareness Month

Lisa Yue, Founding Executive Director, Children’s Cardiomyopathy Foundation

#KnowYourHeart to understand heart disease in your family

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 this month, Children’s Cardiomyopathy Awareness Month gives us the opportunity to talk about the signs, symptoms, and risk factors of this inherited heart disease. Being educated and aware can help families and school personnel identify at-risk children and get them appropriate medical care.

Cardiomyopathy affects the heart’s pumping function and in severe cases can lead to heart failure or sudden death. 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.

While 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 also be at risk.

According to a recent survey conducted by the Children’s Cardiomyopathy Foundation (CCF), 53 percent of parents with a diagnosed 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?

The Olup family
The Olup family unexpectedly discovered that cardiomyopathy runs in their family.

The Olup family knows all too well that cardiomyopathy is a family affair. 11-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.

For families who are determined to be at-risk for cardiomyopathy, genetic testing is recommended for screening family members. Genetic testing can help determine who needs to be more carefully monitored and who will not develop the condition. It also offers families an ability to make informed family planning decisions. CCF created an educational video, Know Your Heart: Genetic Testing for Cardiomyopathy Families, to provide a basic overview of genetic testing and guidance on 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 be aware of the risk factors for cardiomyopathy (downloadable PDF). During Children’s Cardiomyopathy Awareness Month you can share this information with other families to help more at-risk kids get diagnosed 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 website at www.childrenscardiomyopathy.org or call 866-808-CURE (2873).