ACM Resources& Support
Living With Arrhythmogenic Cardiomyopathy
Understanding your heart, recognizing warning signs, and moving forward with confidence.
What Is Arrhythmogenic Cardiomyopathy?
Arrhythmogenic cardiomyopathy, commonly shortened to ACM, is a heart muscle disease that can affect both the heart’s structure and its electrical system.
In ACM, heart muscle cells may become damaged over time and be replaced by scar tissue, and sometimes fatty tissue. These changes can interrupt the heart’s electrical signals, increasing the risk of abnormal heart rhythms called arrhythmias. In some people, ACM can also weaken the heart’s ability to pump blood effectively.
ACM Is More Than AnAbnormal Heart Rhythm
Arrhythmogenic cardiomyopathy can affect the heart muscle cells, the structure and function of one or both ventricles, the heart’s ability to pump blood, and the electrical system that controls the heartbeat.
Breaking Down The Name
arrhythmogenic cardiomyopathy
arrhythmogenic = irregular heartbeat
cardio = heart
myo = muscle
pathy = disease
Right-sided
ACM primarily affects the right ventricle.
Left-sided
Some forms primarily affect the left ventricle.
Biventricular
Both sides of the heart may be involved.
ACM, ARVC, or ARVD?
You may hear several names. ACM is the broader term for arrhythmogenic cardiomyopathy.
ARVC stands for Arrhythmogenic right ventricular cardiomyopathy and describes a form that predominantly affects the right side of the heart
ARVD stands for arrhythmogenic right ventricular dysplasiais which an older term for ARVC you may still encounter.
Listen to your body
Recognizing Possible ACM Symptoms
ACM may not cause symptoms early on. When symptoms appear, they may happen during activity, at rest, or at unpredictable times.
Palpitations
A fluttering, racing, pounding, or irregular heartbeat.
Lightheadedness
Feeling dizzy, unsteady, or close to fainting.
Fainting
Suddenly losing consciousness, especially with activity.
Breathing changes
Shortness of breath or a reduced ability to exercise.
Unusual fatigue
Tiredness that feels new, persistent, or out of proportion.
Fluid buildup
Swelling in the feet, ankles, legs, or abdomen.
Know when to get help
Some symptoms require emergency care.
Call 911 for sudden cardiac arrest, fainting during physical activity, severe or persistent chest pain, severe difficulty breathing, or a sustained racing heartbeat with dizziness, weakness, or fainting.
BUILDING THE FULL PICTURE
How Arrhythmogenic Cardiomyopathy Is Diagnosed
There is no single test that can diagnose every case of ACM.
Specialists combine information about your heart’s structure, electrical activity, symptoms, genetics, and family history. Because ACM can resemble other heart conditions, evaluation by clinicians familiar with inherited cardiomyopathies can be especially valuable.
ACM can be diagnosed by through the following:
Medical & family history
Heart rhythm monitoring
Cardiac MRI
Genetic testing & counseling
Electrocardiogram (ECG)
Echocardiogram
Exercise or stress testing
Your care team may repeat certain tests over time to identify changes that were not visible during an earlier evaluation.
Managing ACM And Abnormal Heart Rhythms
A major goal of ACM care is to identify and manage arrhythmias before they become dangerous. Your plan will reflect your symptoms, test results, heart function, and individual level of risk.
Medications
Beta blockers and antiarrhythmic medications may help control heart rate, reduce palpitations, or prevent abnormal rhythms. Other medicines may support heart function or reduce fluid buildup.
Catheter Ablation
Ablation targets areas involved in abnormal electrical signals. It can reduce recurring arrhythmias, but it may not replace an ICD when one is recommended.
Implantable Cardioverter Defibrillator
An ICD monitors your rhythm and can deliver treatment if it detects a life-threatening arrhythmia. Not everyone with ACM needs one; the decision is individualized.
Heart Failure Care
If the heart becomes weakened, treatment can reduce symptoms and help it work more effectively. Advanced therapies are reserved for severe disease.
Exercise and Arrhythmogenic Cardiomyopathy
ACM can change what kinds and levels of exercise are safe, but recommendations are not identical for everyone.
Research has linked frequent high-intensity and endurance exercise with greater risk of arrhythmias and disease progression in some people with ACM or an ACM-related genetic variant. Talk with an experienced clinician before beginning, stopping, or changing your routine.
Build a movement plan together
- Which activities may be appropriate for you?
- What symptoms mean you should stop?
- Are there safe exertion or heart-rate limits?
- Could supervised cardiac rehabilitation help?
YOUR RESULTS MAY HELP YOUR FAMILY
Genetic Testing and Family Screening For ACM Patients
Arrhythmogenic cardiomyopathy is often inherited, but it can look very different, even among members of the same family.
When a disease-causing genetic variant is found, biological parents, siblings, and children may also have a chance of carrying it. Genetic counseling can help you understand what your results mean and who in your family may benefit from genetic testing or heart screening.
A negative genetic test does not always rule out ACM or inherited risk. If you have a clinical diagnosis but no genetic cause has been identified, first-degree relatives may still be advised to receive cardiac screening.
Questions a genetic counseling can help answer
- What does my result mean?
- Which relatives should be screened?
- What can a negative or uncertain result tell us?
- Could this affect my children or family planning?
Stay Connected to your care
Build Your Ongoing ACM Care Plan
Living with ACM usually involves ongoing monitoring rather than a one-time evaluation...even when you feel well.