Talking with Your Family
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.
SADS conditions are 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 that is associated with 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 genetic mutation could have many symptoms. Often families find that many members are carrying the genetic mutation but have no symptoms at all. This is why tracing your family pedigree is crucial to saving lives.
Completing your family health history (or pedigree) can save lives. After a family member is diagnosed with a SADS condition, 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.
Start by filling out the SADS Family Registration form.
The information the SADS Foundation has gathered from families has already been used in many research projects that have improved treatment and quality of life for individuals with SADS conditions. All the information collected is confidential and anonymous, unless you choose to volunteer for a research study.
Learn more about Family Health History Month
Gather Your Family Health History
To help gather family history information, the US Surgeon General has a free online tool to collect and save your family information and print it to share with your family health care professional.
Download the family health history form from the US Surgeon General
Use their online tool
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 Marcia Baker, Program Director, at [email protected] or 801-948-0654 if you need help or have questions.
What does it look like?
Below are some examples of family pedigrees showing people with a SADS condition and people who do not have a SADS condition in the family.
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!