How the author and her family have come to terms with the knowledge that they are the carriers of a fatal genetic mutation.
Linder’s narrative is a combination of a fascinating medical detective story and an absorbing, powerfully written family chronicle. In 1990, her father began to experience worrying physical symptoms, some of which are now shared by the author and her sister. His leg had swelled, and he was experiencing dizziness. A doctor himself, he sought medical advice to no avail. His symptoms seemed to parallel those of an uncle who died prematurely, but the doctors he consulted were baffled. At first, compression stockings seemed to alleviate the problem, but X-rays revealed an alarming amount of lymphatic fluid in his legs. Over time, these symptoms, still undiagnosed, returned and became progressively worse, leading to his early death in 1996. Linder describes how she was devastated by her father’s death but also somewhat relieved that he was no longer in pain. An autopsy showed that his internal organs were “practically fused together.” The death of her father’s brother from similar symptoms—and their recurrence in other family members—suggested a genetic condition, which they confirmed through genetic testing. The author is now married and in relative good health, but she and her husband have hesitated to risk a pregnancy. She, her sister, and other relatives now take medications that hopefully will keep the disease under control. Despite her family’s tragedies, Linder sees an important opportunity in her collaboration with top scientists seeking to understand and control this unique disease. “Medical genetics has given my family a way of addressing this illness,” she writes, as well “the chance to change our fate….Our story is the story of science, its shortcomings and its miraculous capabilities to change the world.”
Linder successfully integrates cutting-edge genetic research into her personal quest.