One in a Million - Navigating Life with Tuberous Sclerosis Complex is a compelling and inspiring book that sheds light on the realities of living with a rare disease. This insightful guide illuminates the challenges and struggles faced by those living with Tuberous Sclerosis Complex (TSC) and offers practical advice on how to navigate life's many obstacles. From managing symptoms to coping with the emotional impact of a rare disease, this book provides readers with the tools they need to thrive in the face of adversity. Written by a TSC patient and advocate, One in a Million is a comprehensive and compassionate guide that offers hope and encouragement to those struggling with TSC. With its insightful advice, practical tips, and inspiring stories, this book is a must-read for anyone affected by TSC, as well as their loved ones and caregivers. Whether you are facing a recent diagnosis or are a long-time TSC patient, One in a Million is the ultimate guide to living your best life with this rare disease.
"Beyond the Diagnosis: Navigating Life and Science with Sclerosis" Title: Beyond the Diagnosis: Navigating Life and Science with Sclerosis Subtitle: A Comprehensive Guide to Understanding, Managing, and Thriving with Sclerosis Authors: Dr. Sylvester Dylan, Dr. Abigail Morrison, and Joseph D. Johnson, PhD "Beyond the Diagnosis: Navigating Life and Science with Sclerosis" is an essential guide for anyone affected by sclerosis, providing a comprehensive look at the science, management, and personal experiences associated with this complex group of diseases. Authored by leading experts Dr. Sylvester Dylan, a cardiologist, Dr. Abigail Morrison, a neurologist, and researcher Joseph D. Johnson, this book offers a wealth of knowledge and practical advice designed to empower patients, caregivers, and healthcare professionals alike. In-Depth Exploration of Sclerosis: Understand the different types of sclerosis, including Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Systemic Sclerosis (SSc), Lichen Sclerosis, Primary Lateral Sclerosis (PLS), Tuberous Sclerosis Complex (TSC), Medial Sclerosis, and Multiple System Atrophy (MSA). Learn about the causes, risk factors, symptoms, and diagnostic criteria for each type of sclerosis. Discover the latest research and future directions in the field, highlighting promising advancements in treatment and management. Practical Management Strategies: Explore medical management and treatments, from pharmacological interventions and rehabilitation therapies to surgical options and emerging treatments. Gain insights into complementary and alternative therapies, including herbal remedies, mind-body therapies, acupuncture, chiropractic care, and dietary interventions. Find practical advice on managing symptoms, navigating healthcare systems, and adapting daily routines to enhance quality of life. Emotional and Psychological Support: Address the emotional and psychological challenges associated with sclerosis, with strategies for coping, building resilience, and seeking professional support. Learn the importance of building a support network, maintaining relationships, and pursuing passions and goals despite the diagnosis. Gain inspiration from real-life stories and personal journeys of individuals who have thrived despite their diagnosis. Future Planning and Advocacy: Navigate the complexities of legal and financial planning, ensuring that you and your loved ones are prepared for the future. Discover how to advocate for yourself and others, participating in advocacy efforts to raise awareness and support for sclerosis-related issues. Stay informed about the latest research, clinical trials, and innovations in the field, with a focus on improving outcomes and finding a cure. Additional Resources: - Utilize templates and tools for tracking symptoms and progress, maintaining a medication and treatment log, and preparing questions for healthcare providers. - Access a glossary of key terms and concepts, as well as a curated list of additional reading and references, including books, articles, journals, support organizations, and online communities. "Beyond the Diagnosis: Navigating Life and Science with Sclerosis" is more than just a medical guide; it is a companion for the journey, offering hope, support, and a path to thriving with sclerosis. Whether you are newly diagnosed, a long-time patient, a caregiver, or a healthcare professional, this book provides the information and encouragement needed to navigate life beyond the diagnosis.
Multiple sclerosis (MS) causes a myriad of physical, cognitive, and emotional symptoms that impact function and quality of life for those with the disease and those providing care. Navigating Life with Multiple Sclerosis is a practical guide for meeting the challenges of this life-long, unpredictable disease. This insightful guide offers a detailed description of the essential components of comprehensive MS care, from disease and symptom management, rehabilitation to enhance function, safety and independence, social and emotional support, and attention to overall health and wellness for both patients and caregivers. Each chapter offers solutions and guidance based upon the authors' interdisciplinary perspectives and years of clinical and research experience. The person with MS is the center of the care team and this book provides guidance for communicating effectively with healthcare providers, participating comfortably in shared decision making, and advocating confidently for personal healthcare needs and priorities.
Tuberous Sclerosis is a genetic disease characterized by lesions of the skin and central nervous system, seizures, and sometimes sever mental retardation. Infants with this disease may appear overactive, autistic, or socially impaired. Because tuberous sclerosis involves abnormal cellular differentiation, aberrant neuronal migration, and excessive cell proliferation, this thoroughly revised edition will be of interest to a wide range of professionals involved in the study of biological mechanisms underlying many genetically determined neurological disorders.
Parents have come to depend on vaccines to protect their children from a variety of diseases. Some evidence suggests, however, that vaccination against pertussis (whooping cough) and rubella (German measles) is, in a small number of cases, associated with increased risk of serious illness. This book examines the controversy over the evidence and offers a comprehensively documented assessment of the risk of illness following immunization with vaccines against pertussis and rubella. Based on extensive review of the evidence from epidemiologic studies, case histories, studies in animals, and other sources of information, the book examines: The relation of pertussis vaccines to a number of serious adverse events, including encephalopathy and other central nervous system disorders, sudden infant death syndrome, autism, Guillain-Barre syndrome, learning disabilities, and Reye syndrome. The relation of rubella vaccines to arthritis, various neuropathies, and thrombocytopenic purpura. The volume, which includes a description of the committee's methods for evaluating evidence and directions for future research, will be important reading for public health officials, pediatricians, researchers, and concerned parents.
Although epilepsy is one of the nation's most common neurological disorders, public understanding of it is limited. Many people do not know the causes of epilepsy or what they should do if they see someone having a seizure. Epilepsy is a complex spectrum of disorders that affects an estimated 2.2 million Americans in a variety of ways, and is characterized by unpredictable seizures that differ in type, cause, and severity. Yet living with epilepsy is about much more than just seizures; the disorder is often defined in practical terms, such as challenges in school, uncertainties about social situations and employment, limitations on driving, and questions about independent living. The Institute of Medicine was asked to examine the public health dimensions of the epilepsies, focusing on public health surveillance and data collection; population and public health research; health policy, health care, and human services; and education for people with the disorder and their families, health care providers, and the public. In Epilepsy Across the Spectrum, the IOM makes recommendations ranging from the expansion of collaborative epilepsy surveillance efforts, to the coordination of public awareness efforts, to the engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved care and services. Taking action across multiple dimensions will improve the lives of people with epilepsy and their families. The realistic, feasible, and action-oriented recommendations in this report can help enable short- and long-term improvements for people with epilepsy. For all epilepsy organizations and advocates, local, state, and federal agencies, researchers, health care professionals, people with epilepsy, as well as the public, Epilepsy Across the Spectrum is an essential resource.
Presents an account of the remarkable progress made in different areas of neurobiology. This book introduces the structure and development of the brain, showing how they are specialized for the functions they serve. It is concerned with hormones and neurotransmitters.
