Contact Your Family About ARVC
Below is a template you can send to relatives who might also be affected by a SADS condition (learn who might be affected by filling out a pedigree here). Copy and paste the text below into an email, or download it to print it as a letter. Sharing your medical history with your relatives can save their lives!
If you have any questions about this process, or need any other materials, please don’t hesitate to get in contact with us.
Learn more about Family Health History Month
Dear _____________
I want to let you know about some important health information I recently learned that may also affect you as one of my relatives.
I’ve been diagnosed with a serious heart condition called Arrhythmogenic Right Ventricular Tachycardia (ARVC). ARVC affects the structure and function of the heart’s chambers and puts me at an increased risk of developing an arrhythmia that could lead to sudden death if left untreated. Fortunately, ARVC is treatable.
ARVC is genetic and runs in families. This means that all my first-degree relatives (parents, siblings, children) have a 50% chance of also having ARVC. Other family members (aunts, uncles, nieces, nephews, cousins, grandchildren, etc.) may also have inherited this genetic condition. This means there’s a chance that you’re also affected.
Symptoms of ARVC include heart palpitations, lightheadedness, dizziness, passing out, chest pain or discomfort, and sudden cardiac arrest.
My doctor has recommended that you be screened by a SADS expert doctor, called an electrophysiologist. This should include having an EKG, cardiac MRI, 24-hour Holter monitor, and genetic testing. Even if the first evaluation does not have abnormal results, since ARVC is a progressive disease, it is important to undergo repeat evaluations every 3-5 years. If you need help finding a heart rhythm specialist, please go to SADS.org.
Even if you have never had a symptom, you can still have ARVC and still need to be screened.
The good news is that ARVC is treatable–usually with daily medicines, lifestyle modifications, and sometimes a device called an implantable cardiac defibrillator (ICD) or a heart ablation.
Genetic Testing: Genetic testing should be done as part of the screening for ARVC. The cost of genetic testing is usually minimal now, or even free in some cases. Insurance providers generally cover most of the cost.
I am writing because I care about you and I want everyone in our family to know if they have ARVC or not, and, if they do, to get the best treatment available.
The SADS Foundation is a patient advocacy and research organization. I have found the website very helpful and the community I have met through SADS to be very supportive. Please call the SADS Support line at 801.948.0654 or email Genevie, SADS Family Support Director, at [email protected] with any questions or to learn more about ARVC, genetic testing, or screening.
I hope this information has helped, and please feel free to contact SADS with any questions.