Familial Dilated Cardiomyopathy

Dilated cardiomyopathy, or DCM, is a heart muscle condition characterized by gradual weakening of the heart muscle. While DCM may be caused by other conditions, including myocardial infarction, many cases are now known to be caused by genetic mutations carried in families. Individuals with DCM may be only mildly affected or may be severely affected, even in the same family.

Symptoms

Symptoms of DCM include:

  • Shortness of breath with exertion
  • Fluid retention in the legs (edema)
  • Lightheadedness
  • Fainting episodes

Importance of Family Evaluation

Evaluation of the whole family is important since the condition is often passed on to the next generation of a family but may not cause symptoms initially. Fortunately, medications significantly benefit patients with DCM, and early identification of DCM in family members allows the beginning of treatment even before symptoms develop. In individuals with substantial weakening of the heart, irregular heart rhythms (arrhythmias) may develop and can be life threatening. Careful assessment of risk is needed, and this risk is sometimes influenced by the specific genetic type of DCM that is present.

Treatment

High risk individuals may benefit from implantable defibrillators (ICDs). In patients with severe forms of DCM, advanced measures are sometimes needed, including ventricular assist devices and heart transplant. Many patients with DCM do well with medication alone and live full and normal lifestyles.

Our inherited DCM program offers expertise in the clinical evaluation and management of familial DCM in young and older patients, knowledgeable use of genetic testing, genetic counseling, risk assessment, and implantable defibrillator (ICD) placement when needed. For individuals with advanced heart failure, our center also has a dedicated heart failure clinic with expertise across the spectrum of advanced therapy options, including assist devices and heart transplant.

Learn more about our Inherited Cardiomyopathy Team on our Inherited Cardiomyopathies and Arrhythmias Team page.

Patient Resources

Make an Appointment

To make an appointment for expert consultation for a suspected or known inherited cardiomyopathy or arrhythmia condition, contact us toll-free at 888-287-1082 and ask to speak with our program nurse coordinator, Barb Steeves. Please visit our Make a Cardiovascular Appointment page for more information about what to expect when you call us.​