ARVC Fast Facts
Navigate through the sections below to get quick answers to important questions.
Most recently, it is commonly known as ARVC but you may see it referred to as ARVD in the past. Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) is a genetically inherited heart condition. If one of your parents has the faulty gene you have a 50% chance of inheriting it.
It may cause sudden cardiac death in young, apparently healthy individuals. The key to combating ARVC is early detection and monitoring to see if there is fibrofatty replacement of the right ventricular myocardium. Medication, altered exercise routines and in some cases implanting a defibrillator can be steps taken to avoid possible dire consequences.
ARVC is genetic and is caused by mutations in genes. The proteins impacted are involved with cell-to-cell adhesion and this is why it is more common in athletes and the impacts are often delayed. More research is needed to find definitive links and possible testing that helps identify ARVC.
ARVC is a fairly rare genetic disease. It usually starts between the ages of 10 and 50 years old. People are impacted by this in many varying ways and more research is needed to know why.
Symptoms of ARVC tend to get worse over time as the disease affects more of the heart. Some people with ARVC show no symptoms and in fact never know that they have it and others may have more severe symptoms. Some symptoms may include:
- Fainting
- Heart palpitations with unpleasant awareness of the heartbeat
- Dizziness
- Shortness of breath with exertion or when lying down
- Chest pain
- Fatigue
- Swelling in the legs and other areas
- Persistent cough
- Sudden death due to an abnormal heart rhythm
ARVC is a leading cause of sudden death among young athletes but it can affect people of all ages and all activity levels.
ARVC is genetic, so when a relative has it there is possibility for you to be impacted. A parent with an abnormal gene has a 50% chance of giving that gene to their child. If someone in your family has ARVC, you may be able to use genetic testing to see whether you are at risk. Anyone with an abnormal gene should see a doctor for regular monitoring.
Genetic information, cardiac testing, family histories, and physical exams are the best way to combat this potentially fatal condition. You may have seen an athlete drop on the field or heard of that person who was so fit and said, “How did their heart stop, they exercised all the time?” ARVC knows no borders and we look forward to ensuring families impacted can obtain the information they need to stay healthy.
AED’s Save Lives
Below you can find some important information about AED’s. The video here also provides a great example of how to use them.
What is an AED?
An automated external defibrillator (AED) is a lightweight, portable device that delivers an electric shock through the chest to the heart.
The shock can potentially stop an irregular heart beat and ideally it resumes a regular heartbeat. Sudden cardiac arrest occurs when the heart malfunctions and stops beating unexpectedly, an AED can help set the rhythm back to normal.
Why are AEDs important?
AEDs make it possible for more people to respond to
a medical emergency where defibrillation is required. Because AEDs are portable, they can be used by nonmedical people (lay-rescuers). They can be made part of emergency response programs that also include rapid use of 9-1-1 and prompt delivery of cardio pulmonary resuscitation (CPR). All three of these activities are vital to improving survival from SCA.
How do they work?
A built-in computer checks a victim’s heart rhythm through sticky electrodes. The AED will asses whether it is required and if it is will instruct the user to press the shock button. This shock momentarily stuns the heart and stops all activity and gives the heart the chance to resume beating effectively. Instructions are given to the user throughout but it is also recommended to provide training within your workplace or wherever you find them.
Who can use and AED?
You will find that police, fire service personnel, flight attendants, security guards and others are regularly trained to use an AED effectively but anyone can use one, ideally they are trained to do so. It is commonly included in CPR training.
Although formal training in the use of an AED is not required, it is recommended to help the rescuer increase their comfort and level of confidence. It is important to know the location of the AED in public and private buildings, particularly where sports and other high impact endeavours are taking place. Check your workplace and recreationally facilities to know where the AED’s are located. It may just save lives!
Where are they located?
All first-response vehicles, including ambulances, law- enforcement vehicles and many fire engines should have an AED.
AEDs also should be placed in public areas such as sports venues, shopping malls, airports, airplanes, businesses, convention centers, hotels, schools and doctors’ offices. They should also be in any other public or private place where large numbers of people gather or where people at high risk for heart attacks live. Check your work, leisure and the public spaces you frequent to see if an AED is present. Reach out to the local authorities if it is not to ensure this lifesaving device is there when someone needs it in the future.
Find Support
One of our goals is to connect people to local and national networks of support. Please share with us any existing networks through this form.
Dig Deeper
Johns Hopkins Heart and Vascular Institute have curated excellent education materials.
Research
Learn more about the research that is currently happening. Where does this go in the future?
Fundraising for future impact
The financial support raised will go to supporting research and clinical efforts being done at the Peter Munk Cardiac Centre in Toronto.
