Product Description
Sickle cell anaemia is an inherited blood disorder, characterised primarily by chronic anaemia and periodic episodes of pain and occurring in approximately 1 in every 400 African-American infants born in the United States each year. Individuals of Mediterranean, Arabian, Caribbean, South and Central American, and East Indian ancestry can also be affected. The underlying problem involves haemoglobin, a component of the red cells in the blood. The haemoglobin molecules in each red blood cell carry oxygen from the lungs to the body organs and tissues and bring back carbon dioxide to the lungs. In sickle cell anaemia, the haemoglobin is defective. After the haemoglobin molecules give up their oxygen, some of them may cluster together and form long, rod-like structures. These structures cause the red blood cells to become stiff and to assume a sickle shape. Unlike normal red cells, which are usually smooth and donut-shaped, the sickled red cells cannot squeeze through small blood vessels. Instead, they stack up and cause blockages that deprive the organs and tissue of oxygen-carrying blood.This process produces the periodic episodes of pain and ultimately can damage the tissues and vital organs and lead to other serious medical problems. Unlike normal red blood cells, which last about 120 days in the bloodstream, sickled red cells die after only about 10 to 20 days. Because they cannot be replaced fast enough, the blood is chronically short of red blood cells, a condition called anaemia. Sickle cell anaemia is caused by an error in the gene that tells the body how to make haemoglobin. The defective gene tells the body to make the abnormal haemoglobin that results in deformed red blood cells. This book gathers the latest research in this important field. ... Read more

Product Description
Sickle Cell Disease and How It Is Inheritied * Who Has Sickle Cell Disease and Why * Inside the Red Blood Cell * Possible Effects of Sickle Cell Disease * How to Care for People with Sickle Cell Disease * Planning a Family * Searching for a CureAlthough more is known about sickle cell disease than about any other inherited disease, no cure for it exists. It is of enormous biological, social, and historc importance. In America alone, about one in 375 who are of American ancestry is born with sickle cell disease. Since it was first identified in medical literature almost a century ago, its effects have been traced worldwide.This book was written for those who have the disease, their families, the carriers of the sickle cell gene, teachers, care givers, and those who wish to update their information. Included is discussion of the variety of symptoms in both children and adults as well as the emotional aspects of the disease. Of particular interest is a chapter on the care, especially the home care, of those who are affected. Here the reader is made aware of current research, the commitment to finding a cure, and the hope that one ultimately will be devised.Miriam Bloom is a geneticist who has written extensively on health issues for the federal government. A former senior editor for the "Journal of the National Cancer Institute", she is president of SciWrite, an international biomedical writing and editing service. ... Read more

Customer Reviews (1)

Helpful
I did not understand much about the disease until I read this book. This was an excellent source. ... Read more

Product Description
On average, black Americans are sicker and die earlier than white Americans. Uncertain Suffering provides a richly nuanced examination of what this fact means for health care in the United States through the lens of sickle cell anemia, a disease that primarily affects blacks. In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence. Her book is a compelling look at the ways in which the politics of racism, attitudes toward pain and suffering, and the reliance on charity for healthcare services for the underclass can create disparities in the U.S. Instead of burdening hospitals and clinics with the task of ameliorating these disparities, Rouse argues that resources should be redirected to community-based health programs that reduce daily forms of physical and mental suffering. ... Read more

Product Description
Sickle cell disease is a complex disease with a genetic mutation producing a wide variety of manifestations. It is of great public health importance nationally and internationally. While the conclusions of this study support the generally accepted views on the disease, the book provides the most recent information and state-of-the-art knowledge of the subject. The book is unique in that it presents the genetic, molecular, cellular, metabolic, rheologic, clinical, diagnostic, therapeutic, and psychosocial dimensions of sickle cell disease. Its synthesis of micro to macro, molecular to cellular, individual to social relationships provides a comprehensive study of sickle cell disease. ... Read more

Product Description
As many as 30,000 African Americans have sickle cell disease (SCD). Though the political activism of the 1960s and a major 1970s health campaign spurred demands for testing, treatment, and education programs, little attention has been given to how families cope with SCD. This first study to give SCD a social, economic, and cultural context documents the daily lives of families living with this threatening illness. Specifically, Shirley A. Hill examines how low-income African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family's health care. The 23 mostly single mothers Hill studies survive in an inner-city world of social inequality. Despite limited means, they actively participate, create, and define the social world they live in, their reality shaped by day-to-day care giving. These women overcome obstacles by utilizing such viable alternatives as sharing child care with relatives within established kinship networks.Highlighting the role of class, race, and gender in the illness experience, Hill interprets how these women reject, redefine, or modify the objective scientific facts about SCD. She acknowledges and explains the relevance of child-bearing and motherhood to African American women's identity, revealing how the revelation of the SCD trait or the diagnosis of one child often does not affect a woman's interpretation of her reproductive rights. Shirley A. Hill is Associate Professor of Sociology at the University of Kansas. Her most recent book is "African American Children: Socialization and Development in Families". ... Read more

Product Description

Why do racial and ethnic controversies become attached, as they often do, to discussions of modern genetics? How do theories about genetic difference become entangled with political debates about cultural and group differences in America? Such issues are a conspicuous part of the histories of three hereditary diseases: Tay-Sachs, commonly identified with Jewish Americans; cystic fibrosis, often labeled a "Caucasian" disease; and sickle cell disease, widely associated with African Americans.

In this captivating account, historians Keith Wailoo and Stephen Pemberton reveal how these diseases -- fraught with ethnic and racial meanings for many Americans -- became objects of biological fascination and crucibles of social debate. Peering behind the headlines of breakthrough treatments and coming cures, they tell a complex story: about different kinds of suffering and faith, about unequal access to the promises and perils of modern medicine, and about how Americans consume innovation and how they come to believe in, or resist, the notion of imminent medical breakthroughs.

With Tay-Sachs, cystic fibrosis, and sickle cell disease as a powerful backdrop, the authors provide a glimpse into a diverse America where racial ideologies, cultural politics, and conflicting beliefs about the power of genetics shape disparate health care expectations and experiences.

Customer Reviews (1)

A powerful testimony to the power of prejudice even in the field of medical research.
The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease provides a history of diseases which have been connected with racial makeup, sparking ethnic controversies in their discussion and analysis. The authors draw links between biology and social issues, examining underlying influences on research and perspective of modern medicine and how Americans ultimately come to embrace or reject projected breakthroughs. From therapy as social justice to media headlines and changing social perspectives, THE TROUBLED DREAM OF GENETIC MEDICINE is a powerful testimony to the power of prejudice even in the field of medical research.

Diane C. Donovan
California Bookwatch ... Read more

Product Description
The Human Genome Project has spawned a Renaissance of research faced with the daunting expectation of personalized medicine for individuals with sickle cell disease in the Genome Era. This book offers a comprehensive and timeless account of emerging concepts in clinical and basic science research, and community concerns of health disparity to educate professionals, students and the general public about meeting this challenging expectation. Contributions from physicians, research scientists, scientific administrators and community workers make Renaissance of Sickle Cell Disease Research in the Genome Era unique among the catalogue of books on this genetic disorder. ... Read more

Product Description
Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology.This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade.Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including:
-Neuropsychological effects of chemotherapy and radiation therapy
-Bone marrow transplantation
-Important issues about quality of life during and following treatment
-Collaborative research among child-focused psychologists
-Standards of psychological care for children and adolescents
-Stress and coping in the pediatric cancer experience
-The role of family and peer relationships
The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service.With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes. ... Read more

Product Description
Psychosocial Aspects of Sickle Cell Disease presents the most current evaluations and research on biopsychosocial influence and interventions for persons with sickle cell disease. A major step forward in better understanding sickle cell and its ramifications, this innovative book is the first to use the biopsychosocial model as its frame of reference. This model takes into account the biological, psychological, and social influences on persons with sickle cell. The interdisciplinary research in this book begins the process of defining effective comprehensive care programs for those affected by sickle cell disease. This important book consolidates the available research on this topic for busy clinicians and for researchers doing further investigation in this area.

This is the first interdisciplinary group effort to collaborate on a holistic approach to comprehensive care for the sickle cell population. Psychosocial Aspects of Sickle Cell Disease promotes team effort and systematically explores the quality of life issues confronting practitioners and service providers. This groundbreaking book answers practitioners’questions regarding service provision, program development, and further research in the psychosocial issues of sickle cell disease. Included among the chapters are examinations of such issues as:

• effects of sickle cell disease over the lifespan
• school adjustment
• family relations
• adolescents
• mutual support and self-help
• adult population
• emergency services
• policy issues
• future research directions and methodology for studying sickle cell disease
  
  All experts in the human services profession will find this comprehensive information on psychosocial issues invaluable when facing issues such as medical treatment for patients, education about sickle cell disease, counseling, pain management therapy, and occupational therapy, and support services such as housing, transportation, legal services, recreational services, and financial services. Health educators, guidance counselors, nurses, physicians, psychiatrists, psychologists, and social workers will find the information in Psychosocial Aspects of Sickle Cell Disease critical to a comprehensive understanding of the individual affected by sickle cell disease, and ultimately to the development of comprehensive care.

Product Description
This issue by 20 contributors deals with multiple key problems in SCD:Pathophysiology, fat embolism, priapism, Leg ulcers; bone, eye, lung, kidney, and vascular problems. Chapters also address treatment of anemia in SCD and experimental therapy. ... Read more