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!
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. See for more info.
The Genetic Alliance publications and the Mayo Clinic form are also very useful.
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