New Guidance Encourages Safe Exercise for Kids With Cardiomyopathy

For many years, children and adolescents diagnosed with cardiomyopathy, a group of conditions that affect how the heart muscle works, have often been told to limit or avoid physical activity. This cautious approach was largely driven by concerns about sudden cardiac death or worsening heart function. While safety remains a priority, this long-standing guidance has had unintended consequences. Many young patients have become less active, leading to lower fitness levels, reduced quality of life, and a higher risk of other health problems like obesity and diabetes.

Now, a recent scientific statement from the American Heart Association is challenging this one-size-fits-all approach. Based on emerging research, experts say that physical activity may be safer and more beneficial than previously believed for many pediatric patients with cardiomyopathy.

“While safety is always paramount, halting all physical activity among children with cardiomyopathy or implantable cardioverter defibrillators (ICDs) has at times led to unintended consequences,” said Jonathan B. Edelson, M.D., M.S.C.E., chair of the scientific statement writing group, an associate professor of pediatrics and medical director of the sports cardiology program and heart transplant and ventricular assist device programs in the Division of Cardiology at Children’s Hospital of Philadelphia. “The latest research indicates that restricting children’s movement can negatively affect their heart health, physical fitness levels, mental well-being and social development, and quality of life.”

What the New Evidence Shows

Recent studies suggest that in some children with cardiomyopathy, the risk of serious events during exercise may not be significantly higher than in those who are inactive. In fact, regular physical activity may offer important benefits, including the following:

• Improved heart function in some cases (a concept known as “reverse remodeling”)
• Better cardiovascular fitness
• Enhanced emotional well-being and social development
• Reduced risk of additional health conditions related to inactivity

These findings are helping shift the conversation from “avoid exercise” to “how can we safely support activity?”

A More Personalized Approach

Instead of broad restrictions, the new guidance emphasizes individualized decision-making. This means that each child’s situation should be carefully evaluated based on factors such as these:

• The specific type of cardiomyopathy (e.g., hypertrophic, dilated, restrictive or arrhythmogenic)
• Symptoms and disease severity
• Results from advanced heart imaging and exercise testing
• Genetic information, when available
• Whether the child has a device like an ICD

Doctors are encouraged to work closely with families to weigh the risks and benefits of activity, taking into account the child’s age, maturity and personal goals.

Shared Decision-Making Matters

A key message of this guidance is the importance of shared decision-making. Families, patients and health care providers should have open conversations about the following:

• What types of activities are safe
• What warning signs to watch for
• How to gradually build activity levels
• When to reassess as the condition changes over time

Because cardiomyopathy can evolve, ongoing monitoring is essential. What’s appropriate today may need to be adjusted in the future.

Why This Shift Is Important

Encouraging safe physical activity can have lasting benefits — not just for heart health, but for a child’s confidence, independence and overall well-being. Moving away from blanket restrictions helps children feel more included in school, sports and social life, which is critical for development.

“Children with cardiomyopathy should not automatically be sidelined from participating in physical activity, including recreational or competitive sports,” Edelson said. “Most children should be physically active — with individualized evaluation, monitoring and planning. Physical activity is important for their long-term health, physical and social development.”

While not every child with cardiomyopathy will have the same recommendations, this updated guidance offers reassurance: Many children and teens with these conditions can safely participate in physical activity with the right evaluation and support. Rather than avoiding exercise altogether, the focus is now on finding the safest and most beneficial way to stay active.