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A Family Disease
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Book Synopsis A Family Disease by : Dana Lorene Creighton
Download or read book A Family Disease written by Dana Lorene Creighton and published by McFarland. This book was released on 2021-01-11 with total page 203 pages. Available in PDF, EPUB and Kindle. Book excerpt: Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia--a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate. Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Creighton's memoir finds striking similarities and differences in their lives and traces a lineage of family trauma. Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.
Book Synopsis Understanding Genetics by : Genetic Alliance
Download or read book Understanding Genetics written by Genetic Alliance and published by Lulu.com. This book was released on 2009 with total page 104 pages. Available in PDF, EPUB and Kindle. Book excerpt: The purpose of this manual is to provide an educational genetics resource for individuals, families, and health professionals in the New York - Mid-Atlantic region and increase awareness of specialty care in genetics. The manual begins with a basic introduction to genetics concepts, followed by a description of the different types and applications of genetic tests. It also provides information about diagnosis of genetic disease, family history, newborn screening, and genetic counseling. Resources are included to assist in patient care, patient and professional education, and identification of specialty genetics services within the New York - Mid-Atlantic region. At the end of each section, a list of references is provided for additional information. Appendices can be copied for reference and offered to patients. These take-home resources are critical to helping both providers and patients understand some of the basic concepts and applications of genetics and genomics.
Book Synopsis The Inheritance by : Niki Kapsambelis
Download or read book The Inheritance written by Niki Kapsambelis and published by Simon and Schuster. This book was released on 2017-03-07 with total page 368 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Parkinson's Disease by : William J. Weiner
Download or read book Parkinson's Disease written by William J. Weiner and published by JHU Press. This book was released on 2006-11-13 with total page 291 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recent innovations, including deep brain stimulation and new medications, have significantly improved the lives of people with Parkinson’s disease. Nevertheless, medical, emotional, and physical challenges remain. The second edition of this accessible and comprehensive guide provides crucial information for managing this complex condition, including details on the use of medications, diet, exercise, complementary therapies, and surgery. The second edition includes new information about: • The genetic and hereditary pattern of the disease • Medications and uses of established medications • Other approaches to treating the symptoms of Parkinson’s • Juvenile-onset Parkinson’s disease • Normal pressure hydrocephalus • The effects of fluctuating hormones on disease symptoms • Fetal cell transplants and porcine cell transplants • The nutritional supplement Co-Enzyme Q10
Author :North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Publisher :JHU Press ISBN 13 :1421423510 Total Pages :297 pages Book Rating :4.4/5 (214 download)
Book Synopsis Your Child with Inflammatory Bowel Disease by : North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
Download or read book Your Child with Inflammatory Bowel Disease written by North American Society for Pediatric Gastroenterology, Hepatology and Nutrition and published by JHU Press. This book was released on 2017-12-15 with total page 297 pages. Available in PDF, EPUB and Kindle. Book excerpt: "When a child has inflammatory bowel disease, the family has many concerns: Why is my child sick? What can we do to help him get better? What does the future hold for her? In this book, an expert team of pediatric gastroenterologists explains the symptoms, diagnoses, and treatments associated with Crohn disease, ulcerative colitis, and indeterminate colitis to help parents and children cope with the challenges of IBD. The authors' empathy and experience are evident throughout as they answer such questions as: - What are inflammatory bowel disease, Crohn disease, and ulcerative colitis?- Is there a cure for IBD?- How is IBD going to affect my child's daily life?- Will my child's diet change?- Can my child still play sports?- Will my child need surgery?- What are the side effects of commonly prescribed medications?The book also provides parents with practical advice on how to tell their children about their IBD and discusses the challenges children may face at school and in their social lives, especially as they grow older. Additional information on IBD medications, complementary treatments, and further reading round out this comprehensive and reliable resource." --Publisher description.
Book Synopsis McWhinney's Textbook of Family Medicine by : Thomas Freeman
Download or read book McWhinney's Textbook of Family Medicine written by Thomas Freeman and published by Oxford University Press. This book was released on 2016 with total page 537 pages. Available in PDF, EPUB and Kindle. Book excerpt: Preceded by Textbook of family medicine / Ian R. McWhinney, Thomas Freeman. 3rd edition. 2009.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309448093 Total Pages :367 pages Book Rating :4.3/5 (94 download)
Book Synopsis Families Caring for an Aging America by : National Academies of Sciences, Engineering, and Medicine
Download or read book Families Caring for an Aging America written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-11-08 with total page 367 pages. Available in PDF, EPUB and Kindle. Book excerpt: Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
Book Synopsis Parkinson's Disease and the Family by : Nutan Sharma
Download or read book Parkinson's Disease and the Family written by Nutan Sharma and published by Harvard University Press. This book was released on 2009-06-30 with total page 233 pages. Available in PDF, EPUB and Kindle. Book excerpt: Too often, with Parkinson's disease, a loved one serves as medical interpreter, patient advocate, and caregiver. Sharma and Richman draw on the latest research and clinical practice techniques to offer valuable suggestions for managing patient care and, perhaps more important, for healing the family unit.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309439124 Total Pages :171 pages Book Rating :4.3/5 (94 download)
Book Synopsis Ending Discrimination Against People with Mental and Substance Use Disorders by : National Academies of Sciences, Engineering, and Medicine
Download or read book Ending Discrimination Against People with Mental and Substance Use Disorders written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-09-03 with total page 171 pages. Available in PDF, EPUB and Kindle. Book excerpt: Estimates indicate that as many as 1 in 4 Americans will experience a mental health problem or will misuse alcohol or drugs in their lifetimes. These disorders are among the most highly stigmatized health conditions in the United States, and they remain barriers to full participation in society in areas as basic as education, housing, and employment. Improving the lives of people with mental health and substance abuse disorders has been a priority in the United States for more than 50 years. The Community Mental Health Act of 1963 is considered a major turning point in America's efforts to improve behavioral healthcare. It ushered in an era of optimism and hope and laid the groundwork for the consumer movement and new models of recovery. The consumer movement gave voice to people with mental and substance use disorders and brought their perspectives and experience into national discussions about mental health. However over the same 50-year period, positive change in American public attitudes and beliefs about mental and substance use disorders has lagged behind these advances. Stigma is a complex social phenomenon based on a relationship between an attribute and a stereotype that assigns undesirable labels, qualities, and behaviors to a person with that attribute. Labeled individuals are then socially devalued, which leads to inequality and discrimination. This report contributes to national efforts to understand and change attitudes, beliefs and behaviors that can lead to stigma and discrimination. Changing stigma in a lasting way will require coordinated efforts, which are based on the best possible evidence, supported at the national level with multiyear funding, and planned and implemented by an effective coalition of representative stakeholders. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change explores stigma and discrimination faced by individuals with mental or substance use disorders and recommends effective strategies for reducing stigma and encouraging people to seek treatment and other supportive services. It offers a set of conclusions and recommendations about successful stigma change strategies and the research needed to inform and evaluate these efforts in the United States.
Book Synopsis The Family That Couldn't Sleep by : D. T. Max
Download or read book The Family That Couldn't Sleep written by D. T. Max and published by Random House. This book was released on 2006-09-05 with total page 333 pages. Available in PDF, EPUB and Kindle. Book excerpt: For two hundred years a noble Venetian family has suffered from an inherited disease that strikes their members in middle age, stealing their sleep, eating holes in their brains, and ending their lives in a matter of months. In Papua New Guinea, a primitive tribe is nearly obliterated by a sickness whose chief symptom is uncontrollable laughter. Across Europe, millions of sheep rub their fleeces raw before collapsing. In England, cows attack their owners in the milking parlors, while in the American West, thousands of deer starve to death in fields full of grass. What these strange conditions–including fatal familial insomnia, kuru, scrapie, and mad cow disease–share is their cause: prions. Prions are ordinary proteins that sometimes go wrong, resulting in neurological illnesses that are always fatal. Even more mysterious and frightening, prions are almost impossible to destroy because they are not alive and have no DNA–and the diseases they bring are now spreading around the world. In The Family That Couldn’t Sleep, essayist and journalist D. T. Max tells the spellbinding story of the prion’s hidden past and deadly future. Through exclusive interviews and original archival research, Max explains this story’s connection to human greed and ambition–from the Prussian chemist Justus von Liebig, who made cattle meatier by feeding them the flesh of other cows, to New Guinean natives whose custom of eating the brains of the dead nearly wiped them out. The biologists who have investigated these afflictions are just as extraordinary–for example, Daniel Carleton Gajdusek, a self-described “pedagogic pedophiliac pediatrician” who cracked kuru and won the Nobel Prize, and another Nobel winner, Stanley Prusiner, a driven, feared self-promoter who identified the key protein that revolutionized prion study. With remarkable precision, grace, and sympathy, Max–who himself suffers from an inherited neurological illness–explores maladies that have tormented humanity for centuries and gives reason to hope that someday cures will be found. And he eloquently demonstrates that in our relationship to nature and these ailments, we have been our own worst enemy.
Book Synopsis Living with Coronary Heart Disease by : Jerome E. Granato
Download or read book Living with Coronary Heart Disease written by Jerome E. Granato and published by JHU Press. This book was released on 2008-11-01 with total page 217 pages. Available in PDF, EPUB and Kindle. Book excerpt: Coronary heart disease kills more people in the United States than any other heart disorder, and it is the leading cause of death among American women. Jerome E. Granato, a distinguished cardiologist with more than twenty-five years of experience, has created an authoritative and accessible guide to this common condition, providing patients and their families with insight and advice. Dr. Granato begins by describing the basic science of the disease, known also as atherosclerosis, in which arteries become clogged and damaged. He then explains who is at risk and how the disease is detected and diagnosed. He covers all the treatment options, from medications to surgery, and answers such questions as: • How do I know if I have coronary heart disease? • What is a heart attack? • Does my condition need to be treated with surgery? • What are the benefits and risks of balloon angioplasty? • What are stents and how do they work? • How can I manage my condition for the future? He addresses the needs of specific populations, and concludes by discussing how a healthy diet and regular exercise can influence health before and after treatment and how it can help prevent disease. Even after coronary heart disease is diagnosed, its course can be modified. This valuable resource will help patients and their families make some of the most important health care decisions they will ever face.
Download or read book Rare Like Us written by Taylor Kane and published by Bookbaby. This book was released on 2019-09-02 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father's life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future. In Rare Like Us, Taylor, now a twenty-one-year-old college student, shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen it, much less heard of it. She recounts with raw honesty how she managed to conquer her childhood demons and come to terms with her grief and loss; how she transformed her pain into passion and purpose; and how she continues to strive to honor her father's legacy by living her life in a way that would make him proud. This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.
Download or read book Heart Warriors written by Amanda Adams and published by Behler Publications. This book was released on 2012-06-12 with total page 323 pages. Available in PDF, EPUB and Kindle. Book excerpt: A family conquers grief and lost expectations raising their son born with half a heart, while navigating complex medical challenges.
Download or read book The Urge written by Carl Erik Fisher and published by Penguin. This book was released on 2022-01-25 with total page 393 pages. Available in PDF, EPUB and Kindle. Book excerpt: Named a Best Book of the Year by The New Yorker and The Boston Globe An authoritative, illuminating, and deeply humane history of addiction—a phenomenon that remains baffling and deeply misunderstood despite having touched countless lives—by an addiction psychiatrist striving to understand his own family and himself “Carl Erik Fisher’s The Urge is the best-written and most incisive book I’ve read on the history of addiction. In the midst of an overdose crisis that grows worse by the hour and has vexed America for centuries, Fisher has given us the best prescription of all: understanding. He seamlessly blends a gripping historical narrative with memoir that doesn’t self-aggrandize; the result is a full-throated argument against blaming people with substance use disorder. The Urge is a propulsive tour de force that is as healing as it is enjoyable to read.” —Beth Macy, author of Dopesick Even after a decades-long opioid overdose crisis, intense controversy still rages over the fundamental nature of addiction and the best way to treat it. With uncommon empathy and erudition, Carl Erik Fisher draws on his own experience as a clinician, researcher, and alcoholic in recovery as he traces the history of a phenomenon that, centuries on, we hardly appear closer to understanding—let alone addressing effectively. As a psychiatrist-in-training fresh from medical school, Fisher was soon face-to-face with his own addiction crisis, one that nearly cost him everything. Desperate to make sense of the condition that had plagued his family for generations, he turned to the history of addiction, learning that the current quagmire is only the latest iteration of a centuries-old story: humans have struggled to define, treat, and control addictive behavior for most of recorded history, including well before the advent of modern science and medicine. A rich, sweeping account that probes not only medicine and science but also literature, religion, philosophy, and public policy, The Urge illuminates the extent to which the story of addiction has persistently reflected broader questions of what it means to be human and care for one another. Fisher introduces us to the people who have endeavored to address this complex condition through the ages: physicians and politicians, activists and artists, researchers and writers, and of course the legions of people who have struggled with their own addictions. He also examines the treatments and strategies that have produced hope and relief for many people with addiction, himself included. Only by reckoning with our history of addiction, he argues—our successes and our failures—can we light the way forward for those whose lives remain threatened by its hold. The Urge is at once an eye-opening history of ideas, a riveting personal story of addiction and recovery, and a clinician’s urgent call for a more expansive, nuanced, and compassionate view of one of society’s most intractable challenges.
Book Synopsis Wilson's Disease for the Patient and Family by : George J. Brewer
Download or read book Wilson's Disease for the Patient and Family written by George J. Brewer and published by Xlibris Corporation. This book was released on 2002-04-09 with total page 154 pages. Available in PDF, EPUB and Kindle. Book excerpt: Wilsons Disease for the Patient and Family: A Patients Guide to Wilsons disease and Frequently asked Questions about Copper, is an essential reference book for patients with Wilsons disease and their families. In easy-to-understand language, Dr. Brewer, a world authority on Wilsons disease and copper, explains everything about Wilsons disease, from its genetic cause and mechanism of transmission, to effective treatment plans. A comprehensive glossary provides readers with definitions and explanations for many of the scientific words and phrases used in the text. Major reasons why this book is important to patients relate to the rarity of the disease, variation in its manner of presentation, and the likelihood that doctors consulted about the medical problems will know very little about Wilsons disease. Most doctors, even specialists in liver disease or neurology, will see at most one or two cases during their entire medical careers. If patients hope for rapid and early diagnosis, and that is important to preserve as much function as possible, they may need to help the doctor think of the disease in the first place, and help in sorting out what constitutes proper diagnosis. And then, if there is a diagnosis, comes treatment. The days are gone when one drug, penicillamine (the only anticopper drug most doctors have heard of), is prescribed as soon as the diagnosis is made. Now we have different therapies for different stages. In fact, we no longer recommend penicillamine for Wilsons disease at all. This book will guide the patient and family through all of these various aspects of Wilsons disease. Dr. Brewer begins by describing Wilsons disease, what causes it, how it is inherited, and what symptoms people with Wilsons disease exhibit. It is an inherited disorder of copper accumulation and toxicity, affecting one in 40,000 people worldwide. After basic coverage of Wilsons disease, Dr. Brewer devotes an entire chapter to answering some of the most commonly asked questions about copper. Many of these questions are unrelated to Wilsons disease, but are questions frequently asked by other types of patients as they are informed that there is something wrong with their copper. After that, Dr. Brewer explores the symptoms which should trigger the suspicion of Wilsons disease, and what screening tests can be done to explore this possibility. He then covers testing which will give a definitive diagnosis, what the results of different tests mean, and some of the possible problems with various tests which might be performed. Once a reliable diagnosis of Wilsons disease is made, anticopper therapy is essential to the survival of Wilsons disease patients. Dr. Brewer explains what drugs are available for treatment of Wilsons disease, and offers a comparison of their benefits and side effects. He elaborates on variations in treatment, first discussing the initial stage of treatment, and then long-term maintenance therapy. Included in the discussion are tips for treatment of children and pregnant women. The risks and long-term outlook for a person diagnosed with Wilsons disease are discussed in some detail. After these information-packed chapters, Dr. Brewer devotes a chapter to answering some frequently asked questions about Wilsons disease, and presents resources available to Wilsons disease patients and their families. The book concludes as Dr. Brewer examines the current shortcomings in Wilsons disease therapy, and points to areas which might be improved upon in the future.
Book Synopsis Mommy's Disease by : Carolyn Hannan Bell
Download or read book Mommy's Disease written by Carolyn Hannan Bell and published by Createspace Independent Publishing Platform. This book was released on 2014-03-26 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: There are a lot of reasons why we don't talk to our children about alcoholism. We don't want to upset the drinker and make things worse. We don't want to bring attention to the drama and dysfunction. We don't want to be accountable. We want it to go away. We don't want our children to think badly of their parent. We don't know what to say or which words to use. There are a lot of reasons why we don't talk to our children about alcoholism, but none of them are good ones.Talking to children about alcoholism is not hard. NOT talking to children about alcoholism and addiction is hard. Maybe not in the moment, when it feels easier, and maybe even kinder, to cover things up, but in the future when a child's issues borne from misunderstanding, misinterpretation and lack of communication take flight.In an easily understood, beautifully illustrated style, "Mommy's Disease" helps families navigate the difficult waters of alcoholism.Mila doesn't know why her mom doesn't show up for dinners, or soccer games or why she acts funny sometimes. Mila thinks it's because her mom doesn't want to be with her, that she hasn't been the best girl she can be, that she should try harder. But, Daddy tells Mila that Mommy has a disease called "alcoholism." She helps Mila, and her faithful dog Annie, understand what this disease is and how it affects Mommy, and the whole family. He teaches Mila that she is not responsible for Mommy's behavior and that gives Mila the peace she needs to foster a healthy childhood.Praise for "Daddy's Disease": "Carolyn Hannan Bell has given a gift to thousands of children and their parents with her book: "Daddy's Disease". A wonderful book for children who have a parent who has alcoholism. With gentle insight and poignant stories, she introduces us to 7-year-old Tommy whose father is an active alcoholic. Like most children of alcoholics, he is confused, angry and feels it's his fault. This is where Carolyn takes over the voice of Tommy's mother and holds his hand and heart while she guides them through these difficult waters.This is a children's book that everyone living with alcohol should read. Thank you Carolyn"Daniel Gottlieb, PhD Host: "Voices in the Family" WHYY FMAuthor: "Letters to Sam", "Wisdom of Sam" and forthcoming "The Wisdom We're Born With"
Download or read book The 36-Hour Day written by Nancy L. Mace and published by JHU Press. This book was released on 2021-08-10 with total page 361 pages. Available in PDF, EPUB and Kindle. Book excerpt: The 36-Hour Day is the definitive dementia care guide.
