For years, Susan Weiss Liebman, a dedicated geneticist, embarked on a profound journey to uncover the hidden genetic mutation that had quietly claimed the lives of her family members for generations. In her revealing new book, *The Dressmaker’s Mirror*, she shares the harrowing tale that began with a heartbreaking family tragedy—the sudden death of her niece, Karen.

A Family Tragedy

Karen was only 36 years old and pregnant when she collapsed at a Brooklyn restaurant in 2008, ultimately diagnosed with dilated cardiomyopathy (DCM)—a serious condition that weakens the heart muscle, impairing its ability to pump blood effectively. Tragic as it was, this was not an isolated incident; Karen’s mother, Diane, had been grappling with her own heart-related struggles for years, although the genetic roots of their ailments went unrecognized for far too long.

Dr. Liebman reflects on this tragic revelation, stating, “This meant that Diane’s illness was genetic and wasn’t simply a complication of a viral infection, as many doctors had presumed. Instead, Diane unwittingly passed down a lethal gene to Karen.” Motivated by the loss of her loved ones—including her father, who died of a heart attack at the young age of 66—Dr. Liebman felt a pressing responsibility to investigate the genetic origins of their suffering.

A Journey of Discovery

Her quest to unveil the truth led her to delve deep into medical research, consulting with experts and exploring recent advancements in genetic research. What she eventually uncovered was shocking: multiple family members were found to carry a potentially deadly gene mutation that affects the production of a crucial protein responsible for maintaining the health of muscle cells, including those constituting the heart.

Revisiting her family's past, Dr. Liebman recalled a haunting story from her childhood—a tale regarding her uncle Eugene, who had suffered a tragic fate at the tender age of four. Family lore claimed he was killed by a falling mirror, but upon closer examination, Dr. Liebman discovered the official death certificate revealed a different truth: Eugene had succumbed to congestive heart failure, a victim of the same genetic mutation.

The Breaking Point

The mystery of her family’s hidden history intensified after Diane's passing in 2016. During the tumultuous time following her sister's death, Dr. Liebman contacted researchers at Northwestern University who had analyzed her and Diane’s DNA prior to Diane’s demise. The results were groundbreaking; they indicated a previously unrecognized gene variant linked to cardiomyopathy that could unravel the longstanding mystery surrounding their family's health issues.

Understanding the Heritage

Recognizing their family’s Jewish heritage, specifically as Ashkenazi Jews— a group statistically more susceptible to this genetic anomaly—Dr. Liebman initiated a small study to probe the correlation between this mutation and DCM in her demographic. Her findings suggested that the mutation might indeed play a significant role in the prevalence of heart issues within her community.

A Mixed Response

With the knowledge of the faulty gene now in hand, Dr. Liebman felt it was crucial to reach out to her relatives to share this life-altering information. However, the response was mixed; while many were alarmed and eager to learn more, some were skeptical, suspecting it to be a scam.

Fortunately, Dr. Liebman’s family does not carry this dreaded genetic mutation, meaning the cycle of passing it on to future generations can be broken. Her revelation brings hope for those still grappling with the shadow of premature death and unresolved family tragedies. DCM, although serious, can be managed through lifestyle adjustments, regular medical checkups, and appropriate medications.

A Journey of Reflection

In her introspective journey, Dr. Liebman also married her scientific exploration with a deep emotional reckoning of her family's past, acknowledging the fear that had driven her ancestors to conceal the truth. Dr. Michael Arad of Tel Aviv University, whose research identified various mutations within this faulty gene, noted that several individuals from affected families had shown no premonitory signs of heart issues, underscoring the need for greater awareness and early intervention.

A New Hope

Ultimately, Dr. Liebman’s investigation not only reveals the heartbreaking legacy of a genetic curse but also offers a glimmer of hope for breaking the chains that have bound her family for decades. By understanding the genetic underpinnings of these tragedies, she believes future generations can escape the fate that has befallen so many before them—transforming despair into determination, and heartbreak into healing.