The Dysautonomia Project


Kelly Freeman - 2015
    It has been written by physicians & patients for physicians & patients. The book is designed to:- Facilitate a better dialogue between doctor and patient- Be a helpful reference for physicians and others in the clinic or hospital setting- Serve as a core text for the Grand Rounds CME CourseCore chapters are written with patient information on the left and physician information on the right of the book. This layout helps the physician and patient have a more meaningful dialogue. It also helps the patient to prepare well before diagnostic tests and follow up appointments. Academic chapters written by top researchers in ANS disorders and related conditions summarize key findings in recent research.This book is a collaborative effort of many volunteer physicians and patients to speed the time to proper assessment and treatment of patients with dysautonomia at the community level.

POTS - Together We Stand: Riding the Waves of Dysautonomia


Jodi Epstein Rhum - 2011
    Initially conceptualized as a survival guide for children, teens, young adults and parents; it quickly transcended into this unprecedented, critical volume. This encompassing work responds to the many desperate and heartbreaking pleas of those affected by dysautonomia; included are clear explanations of medical information, evidenced-based research, best practices for clinical diagnoses and treatment options, alternative/complimentary medicine approaches, non-medical strategies, coping techniques, helpful tips, patient rights and options, and inspiring narrative accounts of people living with the syndrome around the globe. The book contributors and its readers join hand in hand to represent the POTS dysautonomia community's shared struggles and hopes, concerns and endeavors, unequivocally serving as a living testament that "Together We Stand." This is the 3rd Edition!

A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending Without Breaking


Isobel Knight - 2011
    The author, who has the condition, looks at how it affects children and adolescents and explores pain management, pregnancy, physical and psychological aspects, and how it widely affects dancers and other performance artists. New material includes:changes in terminologyinformation on how osteopathy and nutrition can helppsychological approaches beyond CBThow to deal with professionals what to expect from support groups and rehabilitation programmesThis new edition will be a must for anybody who suffers, or suspects they might be suffering from, Ehlers-Danlos Syndrome (Hypermobility Type) and provides everything needed to enjoy a fulfilling life with this complex condition. It will also be of interest to their families and friends, and professionals working with Hypermobility Type EDS.

The Lady's Handbook for Her Mysterious Illness


Sarah Ramey - 2020
    Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome


Brad T. Tinkle - 2008
    Tinkle has created this handbook with several contributors to expand insights into the understanding and management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome. Dr. Tinkle has received many accolades for his ability to take a complex condition and make it understandable in everyday language: "...provides a wealth of information about the natural history, and physical and medical management... It should be of great value to patients." - The American Journal of Medical Genetics Reader comments... "...a useful tool in helping me obtain the type of care I need to manage my disorder..." "This book is simple but not oversimplified. It is an excellent basic resource, giving a clear, concise, and useful overview for those (like myself) who live with hypermobility." "Super book for EDS! Finally a book that everyone can understand." "...thoroughly explores the problems associated with EDS-HM. It is a relief to realize that it is not just me..." "...a tremendous service for the health care community and the families and friends of those diagnosed or not yet formally diagnosed folks with EDS-HM... joy and clarity in reading the very 'easy to read' text chapters detailing out the impact of EDS-HM..." In addition to the weatlth of positive reviews, Dr. Tinkle's previous book on the same subject was a best seller in several categories: - Genetics - Medical Genetics - Orthopedics - Family and General Practice Brad T. Tinkle, M.D., Ph.D., is a clinical and clinical molecular geneticist at Cincinnati Children's Hospital Medical Center (CCHMC). He specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia among the many.

You Don't Look Sick!: Living Well with Invisible Chronic Illness


Joy H. Selak - 2005
    This resource helps you focus on building a meaningful life that contains illness as opposed to a life of frustration and fear. Designed for patients in at all stages of the chronic illness journey, this book will also be illuminating for caregivers and loved ones.From the book: ""I've learned that having a chronic illness is not a prison sentence. It does not mean I must spend the rest of my life feeling depressed and angry, locked away from the world inside my little sick box. It does not mean that I am useless and no longer have any gifts to share, but it may mean that I must develop some new ones.""You Don't LOOK Sick! addresses practical aspects of chronic illness, such as: hiring a doctor managing chronic pain coping with grief and the loss of function winning battles with health and disability insurers countering the social bias against the chronically ill recognizing the limitations of chronics illness care and charting a path for changeIn You Don't LOOK Sick!: Living Well with Invisible Chronic Illness, you will find stories, dialogue, humor, examples, and analogy of the three stages to illustrate a challenging but navigable journey. You will also find suggested reading materials for learning to live well, medical Internet resources, illness-specific Web sites, names and addresses of national associations, and a bibliography of medical books by topic. The short chapters and straightforward language of the book will be helpful for readers who are weary and dispirited. From the authors: "I've learned that having a chronic illness is not a prison sentence. It does not mean I must spend the rest of my life feeling depressed and angry, locked away from the world inside my little sick box. It does not mean that I am useless and no longer have any gifts to share, but it may mean that I must develop some new ones."--Joy H. Selak"My goal is to work with patients so that, like world class athletes, they can perform at their peak capacity. My job is more than giving answers; I must educate, counsel and encourage patients to set goals and implement a personal care program as well as take appropriate medications."--Dr. Steven Overman The authors are experienced public speakers. If you wish to inquire about their availability to speak to patients or health care professionals, please contact Joy Selak by email at JoyWrites@austin.rr.com.

Cancer-Free: Your Guide to Gentle, Non-toxic Healing


Bill Henderson - 2013
    This latest book gives you a precise regimen for self-treatment along with extensive information on other resources now available to you.

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness


Paul J. Donoghue - 1992
    Since its first publication, Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies to thousands of people who suffer from ICI. Paul Donoghue and Mary Siegel teach their readers how to rethink how they themselves view their illness and how to communicate with loved ones and doctors in a way that meets their needs. The authors' understanding makes readers feel they have been heard for the first time. For this edition, the authors include a new introduction drawing on the experiences of the many people who have responded to the book and to their lectures and television appearances. They expand the definition of ICI to include other ailments such as depression, addiction, and obsessive-compulsive disorders. They bring the resource material, including Web sites, up to the present, and they offer fresh insights on four topics that often emerge: guilt, how ICI affects the family, meaningfulness, and defining acceptance.

Healing the Gerson Way: Defeating Cancer and Other Chronic Diseases


Charlotte Gerson - 2007
    One half, boosted by dazzling high technology, shows brilliant results in handling acute diseases and emergencies. The other half, dealing with chronic degenerative conditions, is lagging behind, unable to offer more than symptomatic treatment for the most widespread distressing conditions ranging from cancer, heart disease and hypertension to diabetes, arthritis and morbid obesity. It is assumed that these and other "diseases of modern civilization" are both inevitable and incurable.Healing the Gerson Way: Defeating Cancer and Other Chronic Diseases contradicts all such assumptions. As a complete guide to the theory and practice of Gerson Therapy, developed over 80 years ago by Dr. Max Gerson, MD (1881-1959), it shows that the increasingly denatured, nutritionally empty, toxic modern diet is the main cause of today's worsening health crisis. This book offers the solution in the form of a brilliant, precision-built nutritional program that eliminates the underlying causes of disease, leading to lasting cures. This program is best know for its success in curing many types of cancer, but it also has an excellent track record with a large number of other degenerative conditions. These days, cancer researchers all over the world produce results that mirror one or another of Dr. Gerson's discoveries, developed over many years of clinical practice. Unfortunately, such partial insights are of little use. The Gerson Therapy, as a proven method of healing, contains them all — and more. It is up to the individual, who wants to improve or regain his or her health and make use of it.

Managing Pain Before It Manages You


Margaret A. Caudill - 1994
    Managing Pain Before It Manages You offers just that--a program to help you reduce your pain and learn coping skills to get your life back. Developed over the author’s many years of working with chronic pain sufferers, this program has been proven effective. Program participants report that they have been able to take control of their pain and cut their doctor visits by more than one third! Straightforward and compassionate, this hands-on guide provides detailed information plus step-by-step techniques, activities, and worksheets (perforated for easy removal and photocopying). Dr. Margaret Caudill helps you: *Understand the causes of chronic pain *Recognize what increases and decreases your pain symptoms *Reduce your pain and emotional distress *Learn effective problem solving *Make informed decisions about medications and nutritional therapies *Incorporate relaxation, meditation, and gentle exercise into your daily routine *Communicate effectively about your pain *Set realistic goals New to the Third Edition Thoroughly revised and updated, the third edition includes the latest information on medications and other clinically proven treatment strategies, expanded coverage of specific pain disorders, and a new appendix featuring Internet resources. Plus, readers can download free MP3 audio files of three of the guided relaxation exercises in the book (one hour total). Association for Behavioral and Cognitive Therapies (ABCT) Self-Help Book of Merit

Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury


John W. Cassidy - 2009
    It may feel as if your world has shifted on its axis, and you'll never get your bearings. Navigating your way through the morass of doctors, medical terms, and the healthcare system can be daunting, especially when you want only what's best for the person you love. Dr. John Cassidy has devoted the past twenty-five years to helping families cope with traumatic brain injury; Mindstorms is his compassionate, comprehensive manual to demystifying this often frightening and life-changing condition. More than 6.3 million Americans live with a severe disability caused by a traumatic brain injury. In fact, because it's so commonplace, but little talked of, TBI is often referred to as the "silent epidemic." In these pages, Dr. Cassidy walks you through the different types of brain injury; explodes the common myths surrounding it; demonstrates the ways in which TBI may affect memory, behavior, and social interaction; explores the newest options in treatment and rehabilitation; and shows you how to hold on to your own sense of self as you journey through. Along with the practical information you'll need, Mindstorms offers a constellation of instructive, moving stories from families and patients who are slowly, but surely, finding their way back. Their experiences are sure to inspire you and yours.

Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties


Laurie Edwards - 2008
    Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived--they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness.Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals.Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Cheating Destiny: Living With Diabetes, America's Biggest Epidemic


James S. Hirsch - 2006
    James Hirsch’s myth-shattering blend of history, reportage, advocacy, and memoir will speak for, and to, the 20 million Americans who live with this disease. Cheating Destiny offers revealing views of the diabetic subculture, the urge toward secrecy that many diabetics feel, the glycemic rollercoaster they ride constantly, and the remarkable perseverance—even heroism—required for survival.Hirsch is uniquely qualified to write this book. An award-winning journalist and best-selling author, he has lived with type 1 diabetes for twenty-five years. His brother Irl, also a diabetic, is one of the country’s leading diabetologists. Most poignantly, he knows firsthand the toll diabetes can take on parents: his three-year-old son was diagnosed with the disease while Hirsch was writing this book.Hirsch draws on all this expertise to craft an incisive, surprising portrayal of the fascinating science behind the disease and the skyrocketing impact of diabetes on our economy and society. Most striking is his candid, authoritative writing about the psychological and emotional hurdles that diabetics confront every day. Anyone who lives with diabetes—or loves a diabetic—will find here an empowering voice of empathy.

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual


Devin J. Starlanyl - 1996
    The management techniques found in Fibromyalgia and Chronic Myofascial Pain include targeted bodywork for painful trigger points and strategies to help you cope with the chronic pain, sleep problems, and numbing effects of 'fibrofog' that occur as a result of the disease.This edition includes coverage of promising new research on the causes of fibromyalgia, evaluation of new treatments, complete discussions of special issues for women and men, and the latest information on medication. It includes a popular provider index, which can help you select those practitioners who will take your complaints seriously and offer knowledgeable treatment advice.