Download or read book A Parent s Guide to Managing Sickle Cell Disease written by Lola Oni and published by . This book was released on 2021 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book The Management of Sickle Cell Disease written by U. S. Department of Health and published by Createspace Independent Publishing Platform. This book was released on 2002 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 Best Seller on Sickle Cell Disease (SCD). Sickle cell disease is a group of blood disorders passed down from parents to children. Sickle cell anemia shortens life expectancy by 30 years via bacterial infections, painful swellings, fever, arthritis, leg ulcers, eye, lung & heart damage. Over 100,000 people, mostly African-Americans, in the United States have sickle cell disease. Over 2 million people have sickle cell trait in America. It is estimated that more than 300,000 children are born each year with SCD around the world. This edition of The Management of Sickle Cell Disease (SCD) is organized into four parts: 1. Diagnosis and Counseling 2. Health Maintenance 3. Treatment of Acute and Chronic Complications 4. Special Topics. The original intent was to incorporate evidence-based medicine into each chapter, but there was variation among evidence-level scales, and some authors felt recommendations could be made, based on accepted practice, without formal trials in this rare disorder. The best evidence still is represented by randomized, controlled trials (RCTs), but variations exist in their design, conduct, endpoints, and analyses. It should be emphasized that selected people enter a trial, and results should apply in practice specifically to populations with the same characteristics as those in the trial. Randomization is used to reduce imbalances between groups, but unexpected factors sometimes may confound analysis or interpretation. In addition, a trial may last only a short period of time, but long-term clinical implications may exist. Another issue is treatment variation, for example, a new pneumococcal vaccine developed after the trial, which has not been tested formally in a sickle cell population. Earlier trial results may be accepted, based on the assumption that the change is small. In some cases, RCTs cannot be done satisfactorily (e.g., for ethical reasons, an insufficient number of patients, or a lack of objective measures for sickle cell "crises"). Thus the bulk of clinical experience in SCD still remains in the moderately strong and weaker categories of evidence. Not everyone has an efficacious outcome in a clinical trial, and the frequency of adverse events, such as with long-term transfusion programs or hematopoietic transplants, might not be considered. Thus, an assessment of benefit-to-risk ratio should enter into translation of evidence levels into practice recommendations. A final issue is that there may be two alternative approaches that are competitive (e.g., transfusions and hydroxyurea). In this case the pros and cons of each course of treatment should be discussed with the patient. This book is B&W copy of the government agency publication.

Download or read book Sickle Cell Pain written by Samir K. Ballas and published by Lippincott Williams & Wilkins. This book was released on 2015-06-01 with total page 1004 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sickle Cell Pain is a panoramic, in-depth exploration of every scientific, human, and social dimension of this cruel disease. This comprehensive, definitive work is unique in that it is the only book devoted to sickle cell pain, as opposed to general aspects of the disease. The 752-page book links sickle cell pain to basic, clinical, and translational research, addressing various aspects of sickle pain from molecular biology to the psychosocial aspects of the disease. Supplemented with patient narratives, case studies, and visual art, Sickle Cell Pain’s scientific rigor extends through its discussion of analgesic pharmacology, including abuse-deterrent formulations. The book also addresses in great detail inequities in access to care, stereotyping and stigmatization of patients, the implications of rapidly evolving models of care, and recent legislation and litigation and their consequences.

Download or read book A Sick Life written by Tionne "T-Boz" Watkins and published by Rodale. This book was released on 2017-09-12 with total page 274 pages. Available in PDF, EPUB and Kindle. Book excerpt: A candid memoir of fame, strength, family, and friendship from the lead singer of TLC As the lead singer of Grammy-winning supergroup TLC, Tionne "T-Boz" Watkins has seen phenomenal fame, success, and critical acclaim. But backstage, she has lived a dual life. In addition to the balancing act of juggling an all-consuming music career and her family, Tionne has struggled since she was a young girl with sickle-cell disease--a debilitating and incurable condition that can render her unable to perform, walk, or even breathe. A Sick Life chronicles Tionne's journey from a sickly young girl from Des Moines who was told she wouldn't live to see 30 through her teen years in Atlanta, how she broke into the music scene, and became the superstar musician and sickle-cell disease advocate she is today. Through Tionne's tough, funny, tell-it-like-it-is voice, she shares how she found the inner strength, grit, and determination to live her dream, despite her often unpredictable and debilitating health issues. She dives deep into never-before-told TLC stories, including accounts of her friendship with Lisa "Left-Eye" Lopes and her tragic death. Tionne's unvarnished discussion of her remarkable life, disease, unending strength, and ability to power through the odds offers a story like no other.

Download or read book Body and Soul written by Alondra Nelson and published by . This book was released on 2011 with total page 289 pages. Available in PDF, EPUB and Kindle. Book excerpt: Alondra Nelson recovers a lesser-known aspect of The Black Panther Party's broader struggle for social justice: health care. Nelson argues that the Party's focus on health care was practical and ideological and that their understanding of health as a basic human right and its engagement with the social implications of genetics anticipated current debates about the politics of health and race.

Download or read book The Making of the Fittest DNA and the Ultimate Forensic Record of Evolution written by Sean B. Carroll and published by W. W. Norton & Company. This book was released on 2007-08-28 with total page 311 pages. Available in PDF, EPUB and Kindle. Book excerpt: A geneticist discusses the role of DNA in the evolution of life on Earth, explaining how an analysis of DNA reveals a complete record of the events that have shaped each species and how it provides evidence of the validity of the theory of evolution.

Download or read book Sickle Cell Anemia written by Fernando Ferreira Costa and published by Springer. This book was released on 2016-03-29 with total page 439 pages. Available in PDF, EPUB and Kindle. Book excerpt: Although sickle cell anemia was the first molecular disease to be identified, its complex and fascinating pathophysiology is still not fully understood. A single mutation in the beta-globin gene incurs numerous molecular and cellular mechanisms that contribute to the plethora of symptoms associated with the disease. Our knowledge regarding sickle cell disease mechanisms, while still not complete, has broadened considerably over the last decades. Sickle Cell Anemia: From Basic Science to Clinical Practice aims to provide an update on our current understanding of the disease’s pathophysiology and use this information as a basis to discuss its manifestations in childhood and adulthood. Current therapies and prospects for the development of new approaches for the management of the disease are also covered.

Download or read book The Enculturated Gene written by Duana Fullwiley and published by Princeton University Press. This book was released on 2011-11-07 with total page 369 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the 1980s, a research team led by Parisian scientists identified several unique DNA sequences, or haplotypes, linked to sickle cell anemia in African populations. After casual observations of how patients managed this painful blood disorder, the researchers in question postulated that the Senegalese type was less severe. The Enculturated Gene traces how this genetic discourse has blotted from view the roles that Senegalese patients and doctors have played in making sickle cell "mild" in a social setting where public health priorities and economic austerity programs have forced people to improvise informal strategies of care. Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success. The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today. Some images inside the book are unavailable due to digital copyright restrictions.

Download or read book Sickle Cell Disease written by Marilyn E. Lewis and published by Nova Science Publishers. This book was released on 2015 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sickle cell disease (SCD) is a genetic disorder caused by an abnormality of hemoglobin. The disease is characterized by a chronic hemolytic anemia. The search for affordable and accessible medicines mainly from plants and having various modes of actions for managing SCD is a priority in Africa where the disease is endemic. The first chapter in this book reviews children with Sickle Cell Disease (SCD). The authors also present their research that shows that clinically, children with SCD behave differently regarding their genetics. The second chapter gives an overview of the current progress in research in calcium handling in red blood cells of sickle cell disease patients, followed by an outlook into the potential use of blockers of the cation channels for therapy of SCD patients. The third chapter reviews and validates the pharmacological relevance of "Gardenia ternifolia" and sustains the use of this herbal medicine in the management of SCD in traditional medical systems. The fourth chapter reviews the search and the development of antisickling herbal drugs in Africa, where Sickle cell disease (SCD) is an endemic. The last chapter reviews SCD and its impact on sexual functioning as well as relationship dynamics. Conclusions support the importance of social support and its far-reaching impact into the coping mechanisms of patients with chronic illness as well as quality of life.

Download or read book A Sickle Cell Coloring Book For Kids A Creative A to Z Guide on Growing Up with Sickle Cell Disease for Children Ages 6 8 With Over 26 Coloring Pages written by Kate Hamernik and published by . This book was released on 2020-05-20 with total page 62 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Sickle Cell Coloring book for Kids was written for children ages 4-8. Itis an educational resource for parents, caregivers, and children. The book breaksdown terms and concepts for children who were diagnosed with sickle celldisease (SCD). When raising achild with a genetic disorder such as SCD there is so much to learn, so theauthor simplified the information so even a child could understand how thisgenetic blood disorder affects the body. The coloring book is great tool forparents or caregivers to color along with the child. ASickle Cell Coloring Book for Kids Features Beautifuloriginal illustrations―Over 26 coloring pages from the letter A to Z all related to caringfor a child with blood disorders. Large 8.5 x 11 inch pages, easy to color forkids Educationaland fun―Each pageis an effective and fun-filled way to relax and reduce stress while coloring. Suitable for coloring with pencils, crayons, and gel pens Madefor diverse families―The coloring pagesfeature children, adults, and medical professionals from different ethnicgroups because sickle cell disease affects families from multicultural backgroundsall over the world. Positiveand inspiring―The book is a positivekeepsake that gives young sickle cell warriors a chance to boost theirconfidence and creativity.

Download or read book Clinical Handbook of Psychological Consultation in Pediatric Medical Settings written by Bryan D. Carter and published by Springer Nature. This book was released on 2020-03-20 with total page 528 pages. Available in PDF, EPUB and Kindle. Book excerpt: This handbook examines pediatric consultation-liaison psychology in pediatric medical settings. It offers a brief history of pediatric psychologists’ delivery of consultation-liaison services. The handbook provides an overview of roles, models, and configurations of pediatric psychology practice in diverse inpatient and outpatient medical settings. Chapters discuss the most frequently seen major pediatric conditions encountered in consultation practice. Coverage includes evaluation, intervention, and treatment of each condition. Each clinical condition addresses the referral problem in the context of history and family dynamics. In addition, chapters address important aspects of the management of a consultation-liaison service and provide contextual issues in delivering evidence-based services in hospital and medical settings. Topics featured in this handbook include: The role of assessment in the often fast-paced medical environment. Modifications of approaches in the context of disorders of development. Consultation on pediatric gender identity. The presentation of child maltreatment in healthcare settings. The use of technological innovations in pediatric psychological consultation. Important ethical considerations in consultation-liaison practice. Clinical Handbook of Psychological Consultation in Pediatric Medical Settings is a must-have resource for clinicians and related professionals as well as researchers, professors, and graduate students in pediatric and clinical child and adolescent psychology, pediatrics, social work, developmental psychology, child and adolescent psychiatry, and related disciplines.

Download or read book Exploring Novel Clinical Trial Designs for Gene Based Therapies written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2020-08-27 with total page 127 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recognizing the potential design complexities and ethical issues associated with clinical trials for gene therapies, the Forum on Regenerative Medicine of the National Academies of Sciences, Engineering, and Medicine held a 1-day workshop in Washington, DC, on November 13, 2019. Speakers at the workshop discussed patient recruitment and selection for gene-based clinical trials, explored how the safety of new therapies is assessed, reviewed the challenges involving dose escalation, and spoke about ethical issues such as informed consent and the role of clinicians in recommending trials as options to their patients. The workshop also included discussions of topics related to gene therapies in the context of other available and potentially curative treatments, such as bone marrow transplantation for hemoglobinopathies. This publication summarizes the presentation and discussion of the workshop.

Download or read book Survival of the Sickest LP written by Dr. Sharon Moalem and published by Harper Collins. This book was released on 2007-05-22 with total page 370 pages. Available in PDF, EPUB and Kindle. Book excerpt: Was diabetes evolution's response to the last Ice Age? Did a deadly genetic disease help our ancestors survive the bubonic plagues of Europe? Will a visit to the tanning salon help lower your cholesterol? Why do we age? Why are some people immune to HIV? Can your genes be turned on—or off? Survival of the Sickest is fi lled with fascinating insights and cutting-edge research, presented in a way that is both accessible and utterly absorbing. This is a book about the interconnectedness of all life on earth—and especially what that means for us. Read it. You're already living it.

Download or read book The Immortal Life of Henrietta Lacks written by Rebecca Skloot and published by Crown. This book was released on 2010-02-02 with total page 386 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

Download or read book Disorders of Hemoglobin written by Martin H. Steinberg and published by Cambridge University Press. This book was released on 2009-08-17 with total page 883 pages. Available in PDF, EPUB and Kindle. Book excerpt: Completely revised new edition of the definitive reference on disorders of hemoglobin.

Download or read book The Code Breaker written by Walter Isaacson and published by Simon and Schuster. This book was released on 2021-03-09 with total page 560 pages. Available in PDF, EPUB and Kindle. Book excerpt: A Best Book of 2021 by Bloomberg BusinessWeek, Time, and The Washington Post The bestselling author of Leonardo da Vinci and Steve Jobs returns with a “compelling” (The Washington Post) account of how Nobel Prize winner Jennifer Doudna and her colleagues launched a revolution that will allow us to cure diseases, fend off viruses, and have healthier babies. When Jennifer Doudna was in sixth grade, she came home one day to find that her dad had left a paperback titled The Double Helix on her bed. She put it aside, thinking it was one of those detective tales she loved. When she read it on a rainy Saturday, she discovered she was right, in a way. As she sped through the pages, she became enthralled by the intense drama behind the competition to discover the code of life. Even though her high school counselor told her girls didn’t become scientists, she decided she would. Driven by a passion to understand how nature works and to turn discoveries into inventions, she would help to make what the book’s author, James Watson, told her was the most important biological advance since his codiscovery of the structure of DNA. She and her collaborators turned a curiosity of nature into an invention that will transform the human race: an easy-to-use tool that can edit DNA. Known as CRISPR, it opened a brave new world of medical miracles and moral questions. The development of CRISPR and the race to create vaccines for coronavirus will hasten our transition to the next great innovation revolution. The past half-century has been a digital age, based on the microchip, computer, and internet. Now we are entering a life-science revolution. Children who study digital coding will be joined by those who study genetic code. Should we use our new evolution-hacking powers to make us less susceptible to viruses? What a wonderful boon that would be! And what about preventing depression? Hmmm…Should we allow parents, if they can afford it, to enhance the height or muscles or IQ of their kids? After helping to discover CRISPR, Doudna became a leader in wrestling with these moral issues and, with her collaborator Emmanuelle Charpentier, won the Nobel Prize in 2020. Her story is an “enthralling detective story” (Oprah Daily) that involves the most profound wonders of nature, from the origins of life to the future of our species.

Download or read book National Sickle Cell Anemia Prevention Act written by United States. Congress. Senate. Labor and Public Welfare and published by . This book was released on 1972 with total page 328 pages. Available in PDF, EPUB and Kindle. Book excerpt: