When Joselin Linder was in her 20s her legs suddenly started to swell. After years of misdiagnoses, doctors discovered a deadly blockage in her liver. Struggling to find an explanation for her unusual condition, Joselin compared the medical chart of her father—who had died from a mysterious disease ten years before—with that of an uncle who had died under similarly strange circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms similar to hers before her death. Clearly, this was more than a fluke.
Setting out to build a more complete picture of the illness that haunted her family, Joselin approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School, for help. Dr. Seidman had been working on her family’s case for 20 years and had finally confirmed that 14 of Joselin’s relatives carried something known as a private mutation—meaning that they were the first known people to experience the baffling symptoms of a brand-new genetic mutation. Here, Joselin tells the story of their gene, the lives it claimed, and the future of genomic medicine and its potential to save those who remain.
Digging into family records and medical histories, conducting interviews with relatives and friends, and reflecting on her own experiences, Joselin wrote The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future, a gripping and compelling chronicle of survival and perseverance. The book, which was published in March of this year, is an important story of a young woman reckoning with her father’s death, her own mortality, and her ethical obligations to herself and those closest to her.
Meeting 42-year-old Joselin Linder in person, you cannot help but be struck by her warm, easygoing nature, engaging smile and upbeat personality. But that belies what she is carrying inside her. It is something that has caused her family untold suffering and heartache, and that, until relatively recently, was a complete medical mystery.
Yet speaking to Joselin, it is quickly apparent that her story isn’t a tragic one. Rather, it is a story about hope, strength and overcoming terrifying obstacles. It is about choosing to carry on and not giving up.
In this interview with Ami Magazine she talks to Simche Goitein about her incredible journey and her hopes for the future despite the odds.