In this episode research geneticist and author Susan Liebman joins us to tell the personal and scientific story behind her memoir The Dressmaker’s Mirror: Sudden Death, Genetics, and a Jewish Family’s Secret.
Susan unpacks generations of silence around heart disease and how sudden deaths and a decades‑long family history of dilated cardiomyopathy led her to the discovery of an FLNC gene mutation (a “founder variant” most prevalent in Ashkenazi Jewish families) which revealed both risk and opportunity for preventing sudden cardiac death.
Top 3 takeaways listeners will learn:
- Why dilated cardiomyopathy can be hereditary and how to get free genetic testing to find a treatable genetic variant.
- How precision medicine (including targeted screening, medications, implantable defibrillators, and soon gene editing) can change outcomes in cardiomyopathy — yet fewer than 1% of people with this condition currently receive germline genetic testing.
- Practical advice for starting conversations with family and clinicians, and how applying genetic knowledge can turn family grief into prevention for future generations.
If you or a loved one has been diagnosed with heart failure or idiopathic dilated cardiomyopathy, this episode is a must‑listen! It blends gripping storytelling with clear, actionable information about genetic testing, genes associated with heart failure and how knowing can help you gain access to precision medicine that could save lives for generations to come.
Helpful Resources
Genetics Cardiomyopathy Awareness Consortium Free genetic testing
Dilated Cardiomyopathy Foundation Free genetic testing
