The Dressmaker's Mirror: Sudden Death, Genetics, and a Jewish Family's Secret
"Part genetics primer and part memoir, this is a richly compelling read." - Booklist
My niece was 36, newly married, and "on top of the world," when she collapsed and died. Her autopsy report caused us to panic--there was something in our blood that could trigger sudden death. As a mother, I prayed for the curse to spare my children. As a geneticist, I plotted to find the killer. Without planning to do so, I became a medical detective.
The book tells of the sorrows a mutation caused my family for generations, revealing a history of resilience and hope. As the stories unfold, I weave in discussions about genetic testing, screening, and gene therapy. The aim is to raise awareness of the crucial role of genetic testing in safeguarding personal health and patient care. I believe I became a geneticist at a time when few women pursued this path because I was destined to help understand the family illness and advocate for genetic testing.
Experts agree on the value of genetic testing when there is a family history of disease, or if the patient has an illness frequently caused by a mutation. Knowing the disease mutation lets other family members find out if they have it too and need preventive care. The book explains that doctors can order tests with genetic counseling at relatively low cost and how this will help them prescribe preventive actions, make earlier diagnoses, and get better outcomes. The book's genetic discussions also delve into the implications of broad-based genetic screening without a family history. Policymakers are currently considering the benefits and drawbacks of this approach and I present both sides of this debate.
While working on this book I uncovered a family secret hidden for over one hundred years. Family lore had it that a heavy dressmaker's mirror fell on and killed my uncle when he was four. But the death certificate told a different story. The true cause of my uncle's death was heart failure. My grandparents fabricated the dressmaker's mirror accident to protect their surviving children's marriage prospects. Long before the discovery of DNA, my grandparents intuited and feared James Watson's message, "We used to think that our fate was in our stars, but now we know that, in large measure, our fate is in our genes." The book suggests genetic testing and associated medical intervention can yet change our fates.
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Susan Weiss Liebman, PhD, is a research professor at the University of Nevada and was formerly a biology professor at the University of Illinois Chicago where she taught undergraduate and graduate genetics for thirty-four years. She currently resides in Reno, Nevada.
... a riveting narrative, tracing the journey from tragedy to triumph over a hidden genetic death sentence... Liebman interlaces her personal saga with the astounding advancements of the past two decades in combating genetic diseases... a compelling argument for the widespread embrace of genetic testing, illuminating its pivotal role in saving lives and enhancing health.
--Siddhartha Mukherjee, author of the The Gene: An Intimate History, #1 New York Times Bestseller... poignant narrative of love, loss, and resilience ... seamlessly blends her family's tragic saga with vital insights into genetic technology... candid reflections on life and emotions, paired with accessible explanations of genetics and medicine ... a rare and compelling reading experience... vivid depictions of Jewish life will resonate deeply... especially significant in today's climate of rising antisemitism.
--Stanley Prusiner, MD, Nobel laureate...intimate ... captivating ... Talmud teaches us: "Whoever saves a single life is considered by Scripture to have saved the whole world." ...inspiring ... from fear and secrecy to the exhilaration of scientific breakthrough and the critical lifesaving value of genetic testing.
--Rabbi Naomi Levy, author of Einstein and the Rabbi... heartfelt storytelling ... deftly navigates the complexities of inherited risk ... compelling, thought-provoking, instructive, and ultimately uplifting. I recommend it to anyone interested in learning the science, addressing their fears, healing from loss, and finding peace in the journey.
--Janice Berliner, director, Genetic Counseling Program, Bay Path University and author of Ethical Dilemmas in Genetics and Genetic CounselingThe Dressmaker's Mirror is a remarkable book...of immediate interest to young women with special talents, members of families affected by genetic disease, Americans appalled by resurgent antisemitism ... it will appeal to anyone looking for a captivating story about life lived large.
--Mayard Olson, PhD, one of the founders of the Human Genome ProjectI love the book The Dressmaker's Mirror: Sudden Death, Genetics, and a Jewish Family's Secret by Susan Liebman. It sheds light on the devastating effect that genetic cardiomyopathy can have on a family and to our entire population. Susan has worked tirelessly to help shed light on this devastating disease and we applaud her for her efforts.
--Greg Ruf, founder and executive director of the Dilated Cardiomyopathy FoundationTechnological advances have made possible diagnosis, and, in some cases, treatment of the myriad of inherited/genetic diseases. Professor Susan Liebman, an accomplished geneticist herself, gives a non-technical introduction to the current state of this field, embedded in her own family story contending with one such condition. The special social/emotional implications of genetic diseases are vividly displayed in these personal recollections, and the current and emerging approaches to diagnosis and therapy ably described in an accessible way.
--Reed Wickner, MD, PhD, NIH distinguished investigator, elected to US National Academy of SciencesThe Dressmaker's Mirror: Sudden Death, Genetics, and a Jewish Family's Secretis a story of a family's secrets, emphasizing the secrets embedded in their genes. I greatly enjoyed the mixture of the life stories of family members, including details that are reminiscent of most families, coupled with a clear description of the inherited disease afflicting many of the family members. This story is a beautiful example of how an understanding of human genetics and human genomics informs our understanding of the past, the present, and our likely future.
--Thomas Petes, PhD, Minnie Geller Distinguished Professor of Research in Genetics, Duke School of Medicine; elected to US National Academy of SciencesA sudden death in her family led geneticist Susan Liebman to investigate its origins. She has written a fascinating discovery of an unknown mutation affecting the heart that is unique to the Ashkenazy Jewish population.
--James Haber, PhD, director, Rosenstiel Basic Medical Sciences Research Center, Brandeis University, and elected to US National Academy of Sciences
