LIFESTYLE CONSIDERATIONS

There are some lifestyle considerations associated with managing cardiomyopathy long term. The most common adjustments involve taking medications and modifying physical activity. For a child with few symptoms, there may only be minor lifestyle changes. As the child grows or his/her heart condition worsens, other restrictions and school accommodations may be introduced.

With any chronic illness, parents and caregivers need to plan ahead when their child travels or attends overnight camp programs. This will include working out a solution for taking medication, wearing a medical identification, and having a medical emergency plan in place.

During a child’s pre-teen and teen years, certain psychosocial issues may receive more attention. These may include handling school and social situations, managing ongoing medical care or compliance, and transitioning to adult care.

The Children’s Cardiomyopathy Foundation (CCF)’s online community, CCF Connect, provides a range of downloadable fact sheets that cover lifestyle topics related to cardiomyopathy. Topics covered include:

• Cardiac Camp Listings
• Emergency Identification Resources
• Exercise and Sports in Children with Cardiomyopathy
• Helping Your Child Cope with Their Cardiomyopathy Diagnosis
• Nutritional Guidelines for Children with Cardiomyopathy
• Transition to College
• Transitioning to Adult Care: A Toolkit for Teen Cardiomyopathy Patients