Living with tuberous sclerosis

Living with tuberous sclerosis

Author:

Publisher:

Published: 1999

Total Pages: 212

ISBN-13: 9780967310008

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A compilation of 26 biographies and 6 autobiographies of children and adults living normal lives despite having tuberous sclerosis.


Living with Tuberous Sclerosis

Living with Tuberous Sclerosis

Author:

Publisher:

Published: 1999

Total Pages: 176

ISBN-13:

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A compilation of 26 biographies and 6 autobiographies of children and adults living normal lives despite having tuberous sclerosis.


Tuberous Sclerosis Complex

Tuberous Sclerosis Complex

Author: David J. Kwiatkowski

Publisher: John Wiley & Sons

Published: 2011-08-24

Total Pages: 415

ISBN-13: 3527644679

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The only comprehensive overview of the molecular basis and clinical features of the genetic disorder tuberous sclerosis, which affects approximately 50,000 people in the US alone. Special focus is placed on novel insights into the signal transduction pathways affected by the disease as well as genotype phenotype correlations, while existing and potential therapies are also discussed in depth. The editors are leading experts in research and treatment of the disease as well as the Vice President of the Tuberous Sclerosis Alliance, the only voluntary health organization for TSC in the US.


One in a Million - Navigating Life with Tuberous Sclerosis Complex

One in a Million - Navigating Life with Tuberous Sclerosis Complex

Author: Daniel Melehi

Publisher: Independently Published

Published: 2023-05-14

Total Pages: 0

ISBN-13:

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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.


Epilepsy Across the Spectrum

Epilepsy Across the Spectrum

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2012-07-29

Total Pages: 568

ISBN-13: 0309259533

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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.


My Life with TSC

My Life with TSC

Author: Evan Moss

Publisher:

Published: 2014-04-06

Total Pages: 38

ISBN-13: 9781497587571

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My Life with TSC, written and illustrated by 10-year-old Evan Moss, tells the story of what it's like to live with tuberous sclerosis complex (TSC). Evan takes a whimsical approach to explaining the daily challenges he faces. He takes a serious topic, infuses his own sense of humor and wit and leaves the reader with a smile on their face and a sense of hope.A portion of the proceeds from this book will be donated to the Tuberous Sclerosis Alliance to fund TSC Research.


Adverse Effects of Pertussis and Rubella Vaccines

Adverse Effects of Pertussis and Rubella Vaccines

Author: Institute of Medicine

Publisher: National Academies Press

Published: 1991-02-01

Total Pages: 382

ISBN-13: 0309103681

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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.


It's Nice to Meet Me Too

It's Nice to Meet Me Too

Author: Cynthia Rust

Publisher:

Published: 2017

Total Pages: 160

ISBN-13: 9781592987689

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Meet Randy. He was diagnosed with the rare genetic disorder tuberous sclerosis complex (TSC) in 1979 at just nine months old. Written from the perspective of Randy's mother, Cynthia, it's nice to meet me too provides snapshots of what life is like raising a severely handicapped child. Randy's brought his fair share of heartbreaks but more importantly, endless laughter and joy. By putting down on paper a lifetime's worth of "Randy stories" that have been shared over with friends and family, she shows the comedic side of life with a child with special needs. - p. 4 of cover


It's Not His Fault

It's Not His Fault

Author: Ray Harris

Publisher: Publicious Pty Limited

Published: 2018-01-18

Total Pages: 258

ISBN-13: 9780646983035

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Tuberous sclerosis and autism are not an illness that is going to get better but can thankfully be managed with medications, patience and understanding "most of the time".


Cassidy and Allanson's Management of Genetic Syndromes

Cassidy and Allanson's Management of Genetic Syndromes

Author: John C. Carey

Publisher: John Wiley & Sons

Published: 2021-01-27

Total Pages: 1104

ISBN-13: 1119432677

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MANAGEMENT OF GENETIC SYNDROMES THE MOST RECENT UPDATE TO ONE OF THE MOST ESSENTIAL REFERENCES ON MEDICAL GENETICS Cassidy and Allanson’s Management of Genetic Syndromes, Fourth Edition is the latest version of a classic text in medical genetics. With newly covered disorders and cutting-edge, up-to-date information, this resource remains the most crucial reference on the management of genetic syndromes in the field of medical genetics for students, clinicians, caregivers, and researchers. The fourth edition includes current information on the identification of genetic syndromes (including newly developed diagnostic criteria), the genetic basis (including diagnostic testing), and the routine care and management for more than 60 genetic disorders. Written by experts, each chapter includes sections on: Incidence Diagnostic criteria Etiology, pathogenesis and genetics Diagnostic testing Differential diagnosis Manifestations and Management (by system) The book focuses on genetic syndromes, primarily those involving developmental disabilities and congenital defects. The chapter sections dealing with Manifestations and Management represents the centerpiece of each entry and is unmatched by other genetic syndrome references. Management of Genetic Syndromes is perfect for medical geneticists, genetic counselors, primary care physicians and all healthcare professionals seeking to stay current on the routine care and management of individuals with genetic disorders.