Contact Your Family About CPVT

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 heart condition called Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) .This puts me at an increased risk of developing a dangerous heart rhythm that could lead to sudden death if left untreated. Fortunately, CPVT is treatable.

CPVT is genetic and runs in families. This means that all my first-degree relatives (parents, siblings, children) have a 50% chance of also having CPVT. 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 CPVT include unexplained syncope (fainting), unexplained seizures, or sudden cardiac arrest. Syncope usually occurs during exercise or other activities that are associated with high adrenaline levels. This can also happen when the person feels emotionally stressed.

My doctor has recommended that you be screened by a SADS expert doctor, called an electrophysiologist. This will probably include having an EKG, stress test, and genetic testing. 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 CPVT and still need to be screened.

The good news is that CPVT is totally treatable–usually with daily medicines. If this condition is diagnosed and treated, individuals can live a normal life.

Genetic Testing:  Genetic testing should be done as part of the screening for CPVT. 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 CPVT 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 Genevie@SADS.org with any questions or to learn more about CPVT, genetic testing, or screening.

I hope this information has helped, and please feel free to contact SADS with any questions.