Saving Lives Through Family Medical History

The number one warning sign of SADS is having a family history of unexpected, unexplained sudden death in a young person under the age of 40.  These deaths can also include sudden drownings, single car accidents or babies who die from SIDS.

Researchers and experts like Dr. Michael Vincent and Dr. Michael Ackerman have long relied on family history to assist them in their diagnosis of inherited cardiac arrhythmias. Collecting detailed medical histories from their patients greatly aided Doctors Vincent and Keating and their colleagues in the discovery of the first chromosomal locations of genes causing an abnormally long QT interval.

Completing your family health history (or pedigree) can save lives directly. After a child is diagnosed with LQTS or any other arrhythmia, other siblings may be at risk, as well as parents, grandparents, aunts, uncles and cousins.

Your family pedigree can identify other family members who may be at risk but don't know about it. They should be tested with ECGs and genetic testing so that they can get treated to prevent a tragic death.

Start Today To Protect Your Family

1.  Complete the Getting Started List by entering the names of relatives, living or deceased. Use this list as a guide to help you know who to contact for information.

2.  Next print as many Short Questionaires as you need for each family member on your list. Talk with your family and omplete the questions--one sheet for each member. A great way to get this done is to take the questionaires to Thanksgiving dinner or other family holiday gatherings.

3.  Finally, contact other family members by mail or phone to get their informaton.

Remember: our goal is to help you expand your pedigree so that you can let family members know that they--or their children--need to be tested. This will save lives!

Sample Letter to Family Members  Use this letter to send to distant family members with the questionaire.

Coming soon in 2010: enter your family into our online database.

Family Pedigree Project

The Family Pedigree Project will assist SADS families to map out their own pedigrees to identify other individuals who may be at risk.  Figure 1 shows how you can start your own personal pedigree or family tree with your immediate family.  Squares represent males, while circles are females.  Colored in circles or squares represent people with a SADS condition.