Interview With the DCM Foundation (Part 1)
Editor's note: The following is part 1 of a two-part interview series with the DCM (dilated cardiomyopathy) Foundation. See part 2.
What is the DCM Foundation?
Founded in 2017, the DCM Foundation is a non-profit organization with a mission to provide hope and support to patients and families with dilated cardiomyopathy (DCM) through research, advocacy, and education. The DCM Foundation was started by several patients, leading DCM researchers, and cardiologists that specialize in the treatment of DCM. Prior to the DCM Foundation, there was no advocacy/support group specifically for patients and families affected by DCM.
The DCM Foundation is focusing on becoming the leading provider of online resources for DCM patients and families. This includes a comprehensive DCM-specific website with online forums for patients and family members to ask questions about DCM and communicate with others with similar concerns. In September 2020, the DCM Foundation plans to launch a monthly webinar series to educate the DCM community on key aspects of DCM and to create a virtual, live opportunity for patients and families to interact with one another. The DCM Foundation is actively collaborating with other heart failure and cardiomyopathy organizations to maximize information and offer comprehensive support to all who are impacted by DCM.
What should people know about DCM?
Some interesting facts about DCM are:
What are the causes, symptoms, and effects on the heart?
Causes: About 50 to 60% of all DCM in the United States results from heart muscle damage caused by a heart attack from coronary heart disease. Close to 50% of the time, DCM has no known cause and in most of these cases, research studies have shown the cause to be genetic and can run in families.
Symptoms: A person with DCM may experience a range of symptoms, or even no symptoms at all. Over time, DCM may lead to heart failure. Symptom severity of heart failure is classified and categorized by the New York Heart Association classification I, II, III, IV.
Effects on the heart: There are two common ways that DCM can affect the heart. The first is arrhythmias, which is a problem with the rate or rhythm of the heartbeat. During an arrhythmia, the heart can beat too fast, too slowly, or with an irregular rhythm. Another common effect of DCM is damage to the heart muscle, which impedes the heart’s ability to efficiently pump blood to the body.
Who is at risk of DCM?
- Individuals with coronary artery disease who are at risk for a heart attack are also at risk for DCM.
- Those with inherited gene mutations known to cause DCM are at risk for developing DCM.
- There are other, less common causes. Certain chemotherapy drugs used to treat cancers (toxic cause) can elevate the risk of DCM, as well as problems with heart valves, congenital heart disease, insufficient thyroid hormone levels (metabolic cause), infection, or iron overload in the heart muscle (another inherited problem).
- There can also be an onset of DCM that occurs during pregnancy or the first several months in the post-partum period. DCM that develops during or in the months after pregnancy may have genetic causes.
Part 2 of this interview!
What can someone do to better support you? (Choose all that apply)