ISBN10 : MINN:31951D035279700 , ISBN13 :
Page Number : 178
"[Kolata] is a gifted storyteller. Her account of the Baxleys... is both engrossing and distressing... Kolata's book raises crucial questions about knowledge that can be both vital and fatal, both pallative and dangerous." —Andrew Solomon, The New York Review of Books New York Times science reporter Gina Kolata follows a family through genetic illness and one courageous daughter who decides her fate shall no longer be decided by a genetic flaw. The phone rings. The doctor from California is on the line. “Are you ready Amanda?” The two people Amanda Baxley loves the most had begged her not to be tested—at least, not now. But she had to find out. If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible? In Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution—not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma—fertility specialists had created a way to spare the children through an expensive process. A work of narrative nonfiction, Mercies in Disguise is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman—Amanda Baxley—who faced the future head on, determined to find a way to disrupt her family’s destiny.
ISBN10 : 9781250123992 , ISBN13 : 1250123992
Page Number : 272
This book presents the health emergency and disaster risk management (H-EDRM) research landscape, with examples from Asia. In recent years, the intersection of health and disaster risk reduction (DRR) has emerged as an important interdisciplinary field. In several landmark UN agreements adopted in 2015–2016, including the Sendai Framework for Disaster Risk Reduction 2015–2030, the 2030 Sustainable Development Goals (SDGs), the Paris climate agreement, and the New Urban Agenda (Habitat III), health is acknowledged as an inevitable outcome and a natural goal of disaster risk reduction, and the cross-over of the two fields is essential for the successful implementation of the Sendai Framework. H-EDRM has emerged as an umbrella field that encompasses emergency and disaster medicine, DRR, humanitarian response, community health resilience, and health system resilience. However, this fragmented, nascent field has yet to be developed into a coherent discipline. Key challenges include redundant research, lack of a strategic research agenda, limited development of multisectoral and interdisciplinary approaches, deficiencies in the science–policy–practice nexus, absence of standardized terminology, and insufficient coordination among stakeholders. This book provides a timely and invaluable resource for undergraduate and postgraduate students, researchers, scholars, and frontline practitioners as well as policymakers from across the component domains of H-EDRM.
ISBN10 : 9789811509247 , ISBN13 : 9811509247
Page Number : 343