Saving Lives Through Family Medical History

The number one warning sign of SADS is a family history of unexpected, unexplained sudden death of a young person under the age of 40. Deaths from drowning, single car accidents or even babies who die from SIDS may also be SADS related.

Researchers and experts such as Dr. Michael Vincent and Dr. Michael Ackerman have long relied on family histories to assist in the diagnosis of inherited cardiac arrhythmias. Collecting detailed medical histories from patients greatly aided 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. After a family member is diagnosed with LQTS, or any other arrhythmia, it is extremely important that other family members be tested.  It is important to know which parent or grandparent has the abnormality since siblings, aunts, uncles, nephews, nieces, and cousins on the affected side are potentially at risk.

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

With the SADS Pedigree Kit, you have the tools you need to trace your family and to reach out to family members to encourage them to be screened.  It also includes guidelines for screening and genetic testing.  Once the data is returned to the SADS Foundation, it can be used for research to save other young lives.

Tracing Patient Family Pedigrees

LQTS is usually inherited by autosomal dominant transmission meaning that each child of an affected parent has a 50% chance of inheriting the genetic abnormality. This means about half your family might have the genetic marker which causes a SADS condition. Not everyone who has the same genetic marker will express the same symptoms. One person can have absolutely no symptoms, but their child with the same gene could have many symptoms. Often families find that many members are carrying the gene but have no symptoms at all. This is why tracing your family pedigree is crucial to saving lives.

Click here to download the pedigree kit.

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!

Please contact Lynn Johnson, Director of Family Support, at Lynn@sads.org or 801-272-3023 if you need help or have questions.

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. Unless it is known which family—your mother's or your father's side—has SADS, both families must complete their family pedigree and have ECG evaluation and genetic testing. 



Figure 2 shows the grandparents and the siblings of both parents.  Once the mother or the father has been diagnosed (in this case the mother), you can continue to look at more generations of that side of the family and have ECG and genetic testing for those at risk.

Figure 3 shows that another son in that first family has been diagnosed and a brother and sister of the mom have also been diagnosed. In all, diagnosing the first child has led to 8 other family members being diagnosed and treated-so far!

Download the Pedigree Kit to start filling out your own pedigree map.

Other Resources for Family Health History

To help gather family history information, the Department of Health and Human Services released a new, free software program that organizes important health information into a printout that can be taken to a health care professional to help determine whether a patient is at higher risk for disease. The printout can also be placed in a patient's medical record.

The Genetic Alliance publications and the Mayo Clinic form are also very useful.