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This gripping story of the doctors at the forefront of Alzheimer's research and the courageous North Dakota family whose rare genetic code is helping to understand our most feared diseases is "excellent, accessible...A science text that reads like a mystery and treats its subjects with humanity and sympathy" (Library Journal, starred review). Every sixty-nine seconds, someone is diagnosed with Alzheimer's disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can. The DeMoe family has the most devastating form of the disease that there is: early onset Alzheimer's, an inherited genetic mutation that causes the disease in one hundred percent of cases, and has a fifty percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, daughter Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer's research and offers the brightest hope for future treatments--and possibly a cure. Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer's through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. "A compelling narrative...and an educational and emotional chronicle" (Kirkus Reviews, starred review), their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this inspiring race against time redefines courage in the face of this most pervasive and mysterious disease.
FORMATPaperback LANGUAGEEnglish CONDITIONBrand New Author Biography
Niki Kapsambelis was born and raised in Boston, Massachusetts. She worked for several years as a newswoman for the Associated Press in New England, Los Angeles, and Pittsburgh. Her work has appeared in publications around the world, including The Washington Post, Los Angeles Times, and People magazine. She lives in Pennsylvania. The Inheritance is her first book.
Review
"In sometimes heartbreaking detail, The Inheritance describes the impact of the disease on individual family members."--Pittsburgh Post-Gazette "Excellent, accessible.... A science text that reads like a mystery and treats its subjects with humanity and sympathy, this volume should be of interest to everyone, as Alzheimer's is now known to be a major cause of dementia in the elderly and because we are facing a potential epidemic as the baby boom generation ages."--Library Journal, starred review "Kapsambelis, an empathetic reporter and storyteller, obviously cares deeply for the DeMoes... With its ethical quandaries and likeable characters, this absorbing story will be of interest to medically curious readers."--Booklist "In her debut, journalist Kapsambelis builds a compelling narrative about Alzheimer's disease around one North Dakota extended family.... In addition to clear discussions of the disease's history and research, Kapsambelis successfully portrays Gail, Galen, and their extended family as fully fleshed individuals. An educational and emotional chronicle that should resonate with a wide variety of readers."--Kirkus Reviews, starred review "The Inheritance is the story of the DeMoe family, plagued by familial, early onset Alzheimer's disease. It is a story of heroes making extraordinary contributions to scientific research, of crusaders driven to change the course of this disease for the sake of their children, the next generation, all of us. I felt honored to read this important book, bearing witness to a historic moment in the quest to cure Alzheimer's."--Lisa Genova, New York Times bestselling author of STILL ALICE? "Niki Kapsambelis has produced an unflinching narrative of a family in an unfathomable situation, seamlessly weaving in the history of the disease and neuroscience's ongoing race against the clock to find a cure. This is a truly important book."--Susannah Cahalan, New York Times bestselling author of BRAIN ON FIRE: My Month of Madness "Kapsambelis is a beautiful writer whose storytelling transports you. I fell in love with the big, loud, awesome DeMoe family and was inspired by the doctors on their long, strange journey into Alzheimer's research. The Inheritance offers a rare, human glimpse at this harrowing disease."--Jeanne Marie Laskas, New York Times bestselling author of CONCUSSION "Science is people. Niki Kapsambelis doesn't let you forget that for one moment in this very human story. The Alzheimer's community is so lucky to have this first-rate storyteller. Her book tackles the disease from every possible angle."--David Shenk, author of THE FORGETTING: Alzheimer's, Portrait of an Epidemic "Niki Kapsambelis adroitly weaves the saga of a family with the stories of the scientists, who are working to develop therapies for this disease. Her insightful reporting makes it impossible not to marvel at the courage of the DeMoe family."--Kathleen Gallagher, author of ONE IN A BILLION: The Story of Nic Volker and the Dawn of Genomic Medicine
Review Quote
"In sometimes heartbreaking detail, The Inheritance describes the impact of the disease on individual family members." -- Pittsburgh Post-Gazette "Excellent, accessible....
Excerpt from Book
The Inheritance One THE ENEMY WITHIN WALK INTO A shopping mall. An amusement park. An auditorium of parents gathered for a school play. Within this crowd, there will be someone--in fact, several people--who are directly and irreversibly affected by Alzheimer''s disease. In the United States, Alzheimer''s is the sixth-leading cause of death. Next to cancer, there is no condition more feared by human beings than Alzheimer''s, for it means more than a slow death; it robs its victims of the key components of their humanity. They lose shared experiences; they fail to recognize their most cherished loved ones; they forget even their proudest accomplishments. The stress of caring for an Alzheimer''s patient has decimated close-knit families, ended happy marriages, snapped the tensile bond between parents and children. And the disease is as baffling as it is unforgiving. An estimated 24 to 36 million people worldwide--5.3 million in the United States alone--suffer from the disease or similar dementias. But Alzheimer''s is the least understood of all major fatal illnesses, frequently mistaken for other conditions, especially depression if the patient is young. Only one in four people who have the disease are actually diagnosed. None of them can be cured. Once thought to be relatively rare, Alzheimer''s is now known to be the leading cause of age-related dementia, and science is only beginning to grasp how common--and how lethal--it really is. For it is always fatal: If patients do not die from secondary causes, such as pneumonia, the disease will eventually move from erasing memory and language to shutting down involuntary functions, such as breathing and swallowing. In the developed world, most major causes of death--including cancer, heart disease, and AIDS--have undergone great strides in treatment across the past quarter century. People do sometimes survive these diseases. But to date, science has been unable to make any kind of dent in Alzheimer''s. In fact, the problem is actually growing, due to the population bubble created by aging baby boomers. It is a disease that ignores celebrity, income, character, and gender. President Ronald Reagan had it, and so did one of his most controversial allies, British Prime Minister Margaret Thatcher. So have movie stars, literary figures, sports heroes, criminals, humanitarians, geniuses, and dullards. It has claimed victims among the most wealthy, powerful, and famous: Rita Hayworth, Norman Rockwell, E. B. White, Sugar Ray Robinson, Charlton Heston, Glen Campbell. * * * For such a formidable enemy, Alzheimer''s managed to keep a low profile for a surprisingly long time. The disease was first identified in 1906 by its namesake, Alois Alzheimer, a German psychiatrist who was also a neuropathologist, meaning he specialized in diseases of the brain and nervous system. But descriptions of similar symptoms have appeared in literature dating back to ancient times. In the second century, Roman emperor Marcus Aurelius employed a Greek-born physician who used the term "morosis" to describe dementia. He described people afflicted with this condition as "some in whom the knowledge of letters and other arts are totally obliterated; indeed they can''t even remember their own names." In recent years, better diagnostic tools have allowed doctors to understand two sobering facts about the way they have approached Alzheimer''s disease: First, that senility is not a normal part of the aging process; people who were once generally described as "senile" often actually had Alzheimer''s, meaning it is a much more widespread disease than anyone realized. And the second fact, which is more frightening, is that no current medical intervention can reverse it, or even slow it down, because for most of the time science has known about Alzheimer''s, there has been no way to see it coming until it has already wreaked havoc within the walls of the brain. From 1906, when Alois Alzheimer first described the disease, until well into the twenty-first century, diagnosing Alzheimer''s disease in living patients was little more than an educated guess. Doctors relied on clinical tests, asking questions about the patient''s memory and ability to function. Though these tests depended on the patient''s honesty, doctors might separately verify answers with close friends or family members. There really weren''t objective physical tests, although there were some telltale physical signs, such as a shuffling walk. Mood changes could occur, too; aggression, hallucinations, and depression were common. But all of these symptoms can also point to other afflictions: meningitis, brain trauma, stroke, syphilis, and medication side effects can produce similar results. Even sleep apnea and urinary tract infections can cause confusion. And while Alzheimer''s disease is the leading cause of dementia, accounting for 60 to 80 percent of all cases, other causes exist, too, such as Parkinson''s and Huntington''s diseases. The word "dementia" is a general catch-all term encompassing many abnormalities. A study of 852 men diagnosed with Alzheimer''s disease from 1991 through 2012 found that the diagnosis was wrong one-third of the time, correct one-third of the time, and partially wrong--in other words, the patient had a mixture of diseases--one-third of the time. And in situations where a patient is young or a doctor has limited experience with memory disorders, the diagnosis becomes even more elusive. For most of the time science has known about the disease, a true, definitive diagnosis of Alzheimer''s--not probable Alzheimer''s--could only happen after death, when a neuropathologist examined brain samples under a microscope to confirm the presence of amyloid plaques and tau tangles, the abnormal proteins that are the disease''s grim signature. Plaques are sticky, microscopic clumps of stray amyloid proteins that form outside the brain cells and possibly prevent the cells from signaling each other. Tangles occur inside the brain cell. They are twisted fibers of the tau protein, which--in its normal state--helps transport nutrients. When its strands begin to twist, they choke the transport system and the cell dies. Current consensus within the Alzheimer''s research field holds that early intervention is key; by the time a person shows what we think of as mild symptoms, such as occasional forgetfulness, the brain may have reached a tipping point from which it will not return. But just how far in advance a doctor would need to give a treatment isn''t known. Is ten years before the onset of symptoms soon enough? Should it be sooner? Can it be later? If scientists were working with a patient who knew that he would develop Alzheimer''s at a specific age, they could answer these questions faster. So even as they search for a viable treatment, researchers also continue to seek out ways to predict who the disease will strike. If they know who will someday get Alzheimer''s, they want to treat that person before he begins to slip away, much the way possible cardiac patients are now given cholesterol-lowering medication to help them avoid heart attacks. But to find such a treatment, doctors need a patient who is guaranteed, with 100 percent certainty, to get the disease--only then will they know if an experimental treatment was successful, by testing it out on that person and then measuring its effect. Those perfect patients do exist, as one tiny sliver of the population who stand distinctly apart from the rest. They are the people living with one of three known genetic mutations that guarantee they will be stricken. Only about 1 percent of all Alzheimer''s patients fall into this category. They are hit young: Their average age of onset is between thirty and fifty years old. Often, they have children, not knowing they stand a 50 percent chance of passing on the mutation; so the disease has raged silently through generations of families. For as little as science has known about Alzheimer''s, it''s known even less about these mutations. But in nature, curses are often a double-edged sword. As tragic as mutations are, they may well hold the key to preventing--or at least delaying--Alzheimer''s. Doctors can diagnose patients with mutations years before symptoms appear, even in childhood. By testing preventative drugs in this population, researchers hope--and the rest of the world prays--that they will be able to translate a successful treatment to the rest of humanity before another generation is lost. To get to that point, quiet sacrifices have been made by the most ordinary of people. They could be your neighbor, your coworker, your high-school classmate. Their lives were sometimes colorful, sometimes simp≤ but in their mutations, they have become exceptional. For it is their courage, often driven by desperation--sometimes tempered by fear or frustration--that has fueled the science that hopes to beget the solution. These are the people future generations will thank when Alzheimer''s itself becomes a distant memory. * * * Alois Alzheimer was a bespectacled, cigar-loving, robus
Details ISBN1451697325 Author Niki Kapsambelis Short Title INHERITANCE Pages 368 Publisher Simon & Schuster Language English ISBN-10 1451697325 ISBN-13 9781451697322 Format Paperback DEWEY B Year 2018 Publication Date 2018-03-13 Subtitle A Family on the Front Lines of the Battle Against Alzheimer's Disease Imprint Simon & Schuster Audience General UK Release Date 2018-03-13 We've got this
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