Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)


  • Condition has several names and acronyms including Arrhythmogenic Cardiomyopathy (ACM), Arrhythmogenic Right Ventricular Dysplasia (ARVD), and sometimes ARVD/C.
  • ACM is a condition of the heart muscle that often causes heart rhythm abnormalities, especially from the lower chambers of the heart (the ventricles).
  • ACM is estimated to affect approximately 1 in 5000 people, men and women, around the world.
  • In Newfoundland, there is a history of a ARVC caused by one specific genetic variant called TMEM43 p.S358L. This variant does occur in other areas around the world and typically leads to arrhythmia in men before age 40.
  • Most people with ACM are diagnosed in their 30s or 40s, but others are diagnosed as young teens or as older adults. It is rare for young children to have symptoms of ACM, so consulting a pediatric cardiologist is best if a young child has a family member diagnosed with ACM.

Treatment/Standard of Care

Diagnosing ACM can be difficult, requiring different heart tests and evaluation by specialists. Treatment for ACM can include medication and cardiac devices such as an implantable defibrillator.

If you have any concerns or questions about ARVC, it is important to talk to your healthcare provider. They can provide you with more information about your condition and help you develop a personalized treatment plan. By working closely with your healthcare team, you can manage your condition and lead a full and healthy life.

Additional Resources

Please note: The Canadian SADS Foundation provides links to external websites for informational purposes only. While we regard these as reputable sources of information, please be aware that The Canadian SADS Foundation is not responsible for the accuracy, legality, or content of the external site or for that of subsequent links.

Johns Hopkins Medicine

Johns Hopkins Medicine has a clinical and research program and their website has links to patient information including videos from patient seminars.

Nova Scotia Health

Nova Scotia Health made a patient brochure about ARVC in 2023.

Info on TMEM43

Information about the research and impact of the TMEM43 gene in Newfoundland.

Hear From Patients Living With ARVC

Mike's Story

Read about Mike’s journey with ARVC.