Contact Your Family

Dear _______,

I am writing to let you know about some important health information I recently learned that may also affect you as one of my relatives. I got this letter from the SADS Foundation to help me notify you about this and to encourage you to take action.

I’ve been diagnosed with a serious heart condition called __________. This results in the risk of an arrhythmia that could cause sudden death if left untreated. Fortunately, ___________ is treatable.

_________ is genetic and runs in families. This means that all my first-degree relatives (parents, siblings, children) have a 50% chance of also having ___________. Other family members (aunts, uncles, nieces, nephews, cousins, grandchildren, etc.) may also have inherited this serious genetic condition. This means there’s a chance that you’re also affected.

My healthcare provider has recommended that you and all my other first-degree relatives be screened by an expert electrophysiologist (heart rhythm specialist). This will probably include having an EKG and a family history. If you need help finding an expert, visit StopSADS.org and click on “Find a Physician” for a referral in your area.

You may want to consider having a genetic test for ______ to confirm the diagnosis. You may also be able to rule out ________ by being tested. If you don’t have any symptoms, you still need to be screened. Many SADS individuals never have symptoms, but are still at risk and can pass the gene on to their children. The cost of genetic testing is less than $200 (or even free!); you’ll need a doctor to order the test for you.

The good news is that ____ is totally treatable. If this condition is diagnosed and treated (often with daily medication), people with my condition can live a normal life.

The problem is that most people with __________ are not diagnosed so they are unaware of their risk. I am not writing to scare you. I am writing because I care about you and I want everyone in our family to know if they have __________ or not, and if they do, to get the best treatment available.

I have sent you this information by email so that you will have it in writing and can bring it to your next medical appointment. I also wanted to write to you so you will have time to think about this before I call you. I will plan to call you in a few days. I might not have all the answers to your questions, but I can point you to the SADS Foundation website (http://www.StopSADS.org) which has many resources to support you.

The SADS Foundation is a patient advocacy and research organization. The SADS Foundation is

a collaboration of people living with SADS, researchers, and clinicians. I have found the website very helpful and the community I have met through the Foundation to be very supportive.

Fondly,

[Insert Sender’s Name]