From ages 10 to 19, adolescence is a developmental stage of noticeable physical transformation and behavioral changes. During this transitional phase from childhood to adulthood, identity development is the focus among teenagers. A chronic disease like cardiomyopathy during this time period can create complications. Teens may experience anger or isolation because of their disease. For them, it is difficult dealing with treatment and medical procedures when they are already dealing with issues of body image, self-identity, independence, relationships with peers, and decisions on sexual behavior, drinking, smoking, and drug use.

As your teen approaches adulthood, there will be new health care considerations. Medical noncompliance is a serious issue during this time. It is not uncommon for teens with chronic illness to decrease their medications, refuse to go to the doctor, or engage in riskier behavior. Parents can help their teen develop emotionally healthy ways of living with cardiomyopathy. This includes taking responsibility for managing their disease, making wise choices about self care, and seeking help when things become overwhelming.

Issues that you and your teen may want to discuss with his/her cardiologist include:

  • Medical follow-up and compliance
  • Physical activity restrictions
  • Guidance on over-the-counter drugs
  • Use of stimulants (alcohol, drugs, caffeine)
  • Precautions on severe loss of blood or body fluid (excessive hemorrhage, diarrhea, vomiting, dehydration)
  • Precautions on extreme hot and cold conditions
  • Precautions on medical or surgical procedure
  • Risk for bacterial endocarditis (tattoos, body piercing, certain medical and dental procedures)
  • Dietary guidelines
  • Sexuality, reproduction
  • Limitations on choice of occupation or military service
  • Risk of thrill-seeking activities (roller coasters, trampolines)

Teens should be encouraged to share their ideas and concerns with anyone on their medical team. If they reach an unstable state due to noncompliance, immediately reach out to your child's doctor for advice. A child psychologist may need to be involved if your teen seems overwhelmed with emotional issues, continues to not follow treatment, or there are signs of regressive, dependent behavior, withdrawal, or sudden disinterest in hygiene and social interaction.

Transitioning to Adult Care

As your child approaches age 18 and prepares to live independently, he/she will need to start taking control of his/her health. It is especially important that your teen understands the need to continue with regular medical visits and follow his/her treatment plan. The cardiologist will let you know when it is time to transition care from a pediatric cardiologist to an adult cardiologist. There is an informative CCF webinar presentation, Tools for Transitioning, which addresses some of these issues. It is viewable on our webinar page.

CCF also offers a Transitioning to Adult Care Toolkit for teens to help with the transition process. The forms are designed to help your teen decide when he or she is ready to be his/her own health spokesperson. It covers topics such as preparing for a doctor's appointment, talking with medical professionals, and keeping track of their medical information.Additionally, a "Transition to College" fact sheet is available on CCF Connect and covers medical care, housing considerations, and exercise/recreational activity information for college students with cardiomyopathy.