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What is Pediatric Cardiomyopathy?

 

Did you know that one in every 100,000 children in the U.S. under the age of 18 is diagnosed with a diseased state of the heart known as cardiomyopathy?  While it is a relatively rare condition in kids, it poses serious health risks, making early diagnosis important.  As the heart weakens due to abnormities of the muscle fibers, it loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.

That’s why we’re proud to team up with the Children’s Cardiomyopathy Foundation this month- Pediatric Cardiomyopathy Awareness Month- to make more parents aware of this condition (signs and symptoms) and to spread the word about the policy changes we can all support to protect our youngest hearts.
 
As a You’re the Cure advocate, you know how important medical research is to improving the prevention, diagnosis, and treatment of heart disease.  And pediatric cardiomyopathy is no exception.  However, a serious lack of research on this condition leaves many unanswered questions about its causes.  On behalf of all young pediatric cardiomyopathy patients, join us in calling on Congress to prioritize our nation’s investment in medical research.
  
Additionally, we must speak-up to better equip schools to respond quickly to medical emergencies, such as cardiac arrest caused by pediatric cardiomyopathy.  State laws, like the one passed in Massachusetts, require schools to develop emergency medical response plans that can include:

  • A method to establish a rapid communication system linking all parts of the school campus with Emergency Medical Services
  • Protocols for activating EMS and additional emergency personnel in the event of a medical emergency
  • A determination of EMS response time to any location on campus
  • A method for providing training in CPR and First Aid to teachers, athletic coaches, trainers and others – which may include High School students
  • A listing of the location of AEDs and the school personnel trained to use the AED

CPR high school graduation requirements are another important measure to ensure bystanders, particularly in the school setting, are prepared to respond to a cardiac emergency.  19 states have already passed these life-saving laws and we’re on a mission to ensure every student in every state graduates ‘CPR Smart’.
   
With increased awareness and research of pediatric cardiomyopathy and policy changes to ensure communities and schools are able to respond to cardiac emergencies, we can protect more young hearts.

Have you or a loved one been diagnosed with cardiomyopathy?  Join our new Support Network today to connect with others who share the heart condition.   

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