Download or read book One in a Million Navigating Life with Tuberous Sclerosis Complex written by Daniel Melehi and published by Independently Published. This book was released on 2023-05-14 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Beyond the Diagnosis written by Dr Abigail Morrison and published by Independently Published. This book was released on 2024-06-12 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "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.

Download or read book My Life and Thoughts with Tuberous Sclerosis Complex written by Robin Hudson and published by . This book was released on 2015-08-10 with total page 190 pages. Available in PDF, EPUB and Kindle. Book excerpt: this book is about a woman born with tuberous sclerosis complex and ADHD. She had a front right lobectomy at the age of 5.

Download or read book Living with tuberous sclerosis written by and published by . This book was released on 1999 with total page 212 pages. Available in PDF, EPUB and Kindle. Book excerpt: A compilation of 26 biographies and 6 autobiographies of children and adults living normal lives despite having tuberous sclerosis.

Download or read book Living with Tuberous Sclerosis written by and published by . This book was released on 1999 with total page 176 pages. Available in PDF, EPUB and Kindle. Book excerpt: A compilation of 26 biographies and 6 autobiographies of children and adults living normal lives despite having tuberous sclerosis.

Download or read book Tuberous Sclerosis Complex written by Manuel Rodriguez Gomez and published by Oxford University Press. This book was released on 1999-07-15 with total page 365 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Molecular and Cellular Neurobiology written by S. Prasad and published by Alpha Science Int'l Ltd.. This book was released on 2005 with total page 338 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Epilepsy Across the Spectrum written by Institute of Medicine and published by National Academies Press. This book was released on 2012-07-29 with total page 568 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Adverse Effects of Pertussis and Rubella Vaccines written by Institute of Medicine and published by National Academies Press. This book was released on 1991-01-01 with total page 382 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Rare Diseases and Orphan Products written by Institute of Medicine and published by National Academies Press. This book was released on 2011-04-03 with total page 442 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rare diseases collectively affect millions of Americans of all ages, but developing drugs and medical devices to prevent, diagnose, and treat these conditions is challenging. The Institute of Medicine (IOM) recommends implementing an integrated national strategy to promote rare diseases research and product development.

Download or read book Neurological Psychiatric and Developmental Disorders written by Institute of Medicine and published by National Academies Press. This book was released on 2001-01-01 with total page 458 pages. Available in PDF, EPUB and Kindle. Book excerpt: Brain disordersâ€"neurological, psychiatric, and developmentalâ€"now affect at least 250 million people in the developing world, and this number is expected to rise as life expectancy increases. Yet public and private health systems in developing countries have paid relatively little attention to brain disorders. The negative attitudes, prejudice, and stigma that often surround many of these disorders have contributed to this neglect. Lacking proper diagnosis and treatment, millions of individual lives are lost to disability and death. Such conditions exact both personal and economic costs on families, communities, and nations. The report describes the causes and risk factors associated with brain disorders. It focuses on six representative brain disorders that are prevalent in developing countries: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, depression, and stroke. The report makes detailed recommendations of ways to reduce the toll exacted by these six disorders. In broader strokes, the report also proposes six major strategies toward reducing the overall burden of brain disorders in the developing world.

Download or read book Handbook of Life Course Health Development written by Neal Halfon and published by Springer. This book was released on 2017-11-20 with total page 667 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book is open access under a CC BY 4.0 license. ​This handbook synthesizes and analyzes the growing knowledge base on life course health development (LCHD) from the prenatal period through emerging adulthood, with implications for clinical practice and public health. It presents LCHD as an innovative field with a sound theoretical framework for understanding wellness and disease from a lifespan perspective, replacing previous medical, biopsychosocial, and early genomic models of health. Interdisciplinary chapters discuss major health concerns (diabetes, obesity), important less-studied conditions (hearing, kidney health), and large-scale issues (nutrition, adversity) from a lifespan viewpoint. In addition, chapters address methodological approaches and challenges by analyzing existing measures, studies, and surveys. The book concludes with the editors’ research agenda that proposes priorities for future LCHD research and its application to health care practice and health policy. Topics featured in the Handbook include: The prenatal period and its effect on child obesity and metabolic outcomes. Pregnancy complications and their effect on women’s cardiovascular health. A multi-level approach for obesity prevention in children. Application of the LCHD framework to autism spectrum disorder. Socioeconomic disadvantage and its influence on health development across the lifespan. The importance of nutrition to optimal health development across the lifespan. The Handbook of Life Course Health Development is a must-have resource for researchers, clinicians/professionals, and graduate students in developmental psychology/science; maternal and child health; social work; health economics; educational policy and politics; and medical law as well as many interrelated subdisciplines in psychology, medicine, public health, mental health, education, social welfare, economics, sociology, and law.

Download or read book Guidelines Manual written by United States Sentencing Commission and published by . This book was released on 1988 with total page 556 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book The Comorbidities of Epilepsy written by Marco Mula and published by Academic Press. This book was released on 2019-04-20 with total page 413 pages. Available in PDF, EPUB and Kindle. Book excerpt: Epilepsy is one of most frequent neurological disorders affecting about 50 million people worldwide and 50% of them have at least another medical problem in comorbidity; sometimes this is a the cause of the epilepsy itself or it is due to shared neurobiological links between epilepsy and other medical conditions; other times it is a long-term consequence of the antiepileptic drug treatment. The Comorbidities of Epilepsy offers an up-to-date, comprehensive overview of all comorbidities of epilepsy (somatic, neurological and behavioral), by international authorities in the field of clinical epileptology, with an emphasis on epidemiology, pathophysiology, diagnosis and management. This book includes also a critical appraisal of the methodological aspects and limitations of current research on this field. Pharmacological issues in the management of comorbidities are discussed, providing information on drug dosages, side effects and interactions, in order to enable the reader to manage these patients safely. The Comorbidities of Epilepsy is aimed at all health professionals dealing with people with epilepsy including neurologists, epileptologists, psychiatrists, clinical psychologists, epilepsy specialist nurses and clinical researchers. Provides a comprehensive overview of somatic, neurological and behavioral co-morbidities of epilepsy Discusses up-to-date management of comorbidities of epilepsy Written by a group of international experts in the field

Download or read book Diffuse Cystic Lung Diseases written by Nishant Gupta and published by Springer Nature. This book was released on 2021-01-28 with total page 384 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book is a comprehensive reference on diffuse cystic lung diseases (DCLDs). DCLDs are a group of pathophysiologically heterogenous processes that are characterized by the presence of multiple spherical or irregularly shaped, thin-walled, air-filled spaces within the pulmonary parenchyma. In recent years, tremendous advancements have been made in these diseases leading to improved understanding of the underlying pathophysiology, and improved outcomes with targeted therapies. The authors, who are leading experts in the field, delineate DCLDs as a separate category distinct from other interstitial lung diseases, and have created this textbook specifically dedicated to this disease group. This book begins with a chapter introducing the definition and classification of DCLDs. Subsequent chapters address the pathogenic mechanisms underlying pulmonary cyst formation and provide a detailed overview of the radiological and pathological features of DCLDs. The common as well as uncommon causes of DCLDs are comprehensively reviewed in individual chapters, as are the varied clinical presentations and extrapulmonary manifestations, and approaches to management and treatment. The book culminates in a final chapter that presents a practical algorithmic approach to diagnosis that progresses from least invasive to most invasive approaches. This textbook provides a one-stop, comprehensive and integrated, clinical, radiologic, and pathologic overview of DCLDs that will be as useful to the practicing clinician as it is to the clinical investigator.

Download or read book Loving Tiara written by Tiffani Goff and published by Tiffani Goff. This book was released on 2019-11-19 with total page 404 pages. Available in PDF, EPUB and Kindle. Book excerpt: Loving Tiara is a compelling memoir that will encompass your every thought, break your heart, fill you with hope, and leave you with a sense of awe. "I have found the quiet. At forty-five years old, my life's mission was complete. If I died tomorrow, I would be proud of the life I lived." - Loving Tiara When Tiffani married the love of her life, Lou, after graduating from college, she assumed she would continue to live the affluent life she had always known, having grown up in Newport Beach, California. She never imagined she would soon be stalked by creditors, driving a car on the repossession list and forced to worry about providing basic necessities for her family, such as buying diapers and groceries. This increasingly desperate situation forced her to decide to return home to her parents with her baby and husband. After getting their life back on track, and with Tiffani in her final year of law school, they decided to have another baby. At eight months old, however, they discovered that their new daughter Tiara had Tuberous Sclerosis, a rare genetic disorder resulting in intractable epilepsy, developmental delay, chronic hospital admissions, and uncontrollable violent behaviors. So how did Tiffani cope with her new reality? She chose to fight. She challenged the doctors, battled the insurance companies, and refused to give up caring for Tiara even when her own life was at risk The author's story of unconditional love, unimaginable challenges, and, ultimately, triumph, is a compelling one, which will take hold of your heart and not let go. This memoir will inspire you to tackle fear, encourage you never to give up, and remind you always to trust your gut instincts.

Download or read book Polycystic Kidney Disease written by Benjamin D. Cowley, Jr. and published by Springer. This book was released on 2018-05-24 with total page 274 pages. Available in PDF, EPUB and Kindle. Book excerpt: This comprehensive guide to polycystic kidney disease captures the growing knowledge of this common, potentially-fatal and hereditary disease. The first two sections of the book provide an overview of PKD gene structures, mutations and pathophysiologic mechanisms. This is followed by chapters focused on PKD’s clinical features, including renal and extrarenal manifestations, and appropriate management of patients. The final section covers current clinical trials and emerging therapies in PKD. Authored by experts in the field, this book provides the clinician and researcher with critical information on basic and translational science and clinical approaches in one concise resource.