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.

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.

Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity


Lawrence B. Afrin - 2016
    Afrin started coming to understand that a newly recognized type of mast cell disease, now called mast cell activation syndrome (MCAS), was the underlying diagnosis in many patients he was seeing who were each suffering large assortments — quite different from one patient to the next — of chronic multisystem inflammatory illnesses of unclear cause. Dr. Afrin soon gained experience that MCAS is far more prevalent than the only mast cell disease previously known to medicine (the rare disease of mastocytosis) and that most MCAS patients, once accurately diagnosed, can eventually find significantly helpful medications targeted at the disease. The frequency and magnitude of the improvements Dr. Afrin has seen — even the relief that comes from finally having a unifying diagnosis other than "psychosomatism" — have spurred him to focus in this area, not only tending to the needs of his patients but also pursuing research to advance our understanding of the disease and helping to educate other professionals who in turn can help even more of the many people who have long been suffering not only the symptoms of the disease but also the natural concern of not understanding why one would be so "unlucky" to have acquired so many medical problems. As it turns out, such patients are not so unlucky and truly have just one root issue (and a very common one at that), which has the biological capability to develop, directly or indirectly, into most or all of their previously diagnosed problems. There is a great deal yet to learn about this, but even with just the present very limited understanding, the opportunity to diagnose and help patients with MCAS seems to be enormous and Dr. Afrin felt a description of the disease, written for the general public, might help lead some MCAS patients on a journey to diagnosis and improvement sooner rather than later. Dr. Afrin hopes this book will help people who might have, or do have, MCAS. A portion of the proceeds of purchases of this book will go to support research and education in this area.

Diagnosis and Treatment of Chronic Fatigue Syndrome: it's mitochondria, not hypochondria!


Sarah Myhill - 2014
    They are the powerhouses of our cells, essential for the production and management of energy at cell level. Dr Sarah Myhill, together with Dr John McLaren Howard of Acumen Laboratories and Dr Norman Booth of Mansfield College Oxford, has spent many years studying the relationship between their malfunction and the commonest problem seen by GPs in the UK – fatigue. Their research findings have been published in three scientific papers in the International Journal of Clinical and Experimental Medicine, in 2009, 2012 and 2013. These studies showed that poor functioning of the mitochondria is the central problem in CFS. Patients with the worst mitochondrial function had the worst fatigue and vice versa. This is solid scientific evidence that CFS is a problem with mitochondria and has allowed the objective measurement of fatigue for the first time. With the publication of the third study, which showed that mitochondrial function tests and symptoms improved in patients who took measures to address their mitochondrial problems, Dr Myhill was ready to write this book. Here she explains the importance of healthy mitochondria, how we can measure their functioning and what we can do to keep them healthy, or restore them to health if problems arise. CFS is all in our cells, not in our minds!

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.

Living with Fibromyalgia


Christine Craggs-Hinton - 2000
    This volume covers the symptoms, causes, diagnosis, treatment (including analgesics and NSAIDS), self-help (including diets and complementary therapies), plus the stresses of living with a chronic condition. It is endorsed by the Fibromyalgia Association.

Fibromyalgia: A Guide to Understanding the Journey


Shelly Bolton - 2013
    HELP, I'M FALLING APART!!This quick read is informative and entertaining, with personal stories and documented research.

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.

I'm Only In It for the Parking: Life and laughter from the priority seats


Lee Ridley - 2019
    The funniest book I've read in years.' DAVID WALLIAMSLee Ridley won the hearts and minds of the nation on Britain's Got Talent. Now the much-loved comedian opens up about what it's like to be him.I'm Only In It for the Parking is a wonderful romp through Lee's extraordinary life, by way of the people who like to pray for him, the comparisons with Stephen Hawking, some perilous falls, some epic fails and more information about Lee's private life than you probably need.This is the wickedly funny story of the stand-up who struggles to stand up, but who learns to finds his feet. The Geordie without the accent. The entertainer who really can't speak at all, but who has something important to say.- 'Hilarious.' The Sun- 'A unique and brilliant comic voice.' Ross Noble

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!

Ultimate PCOS Handbook: Lose Weight, Boost Fertility, Clear Skin and Restore Self-Esteem


Colette Harris - 2008
    PCOS authorities and sufferers Colette Harris and Theresa Cheung will empower readers to take control of their bodies and beat naturally, the often embarrassing symptoms of this syndrome, including weight gain, acne, excess body hair, mood swings, depression, and exhaustion. Packed full of the latest science, uptodate nutrition, and the best in self-help and natural therapies, their comprehensive book shows how women can start to see their PCOS symptoms improve in as little as 2 weeks.

Exercise Myths


Rujuta Diwekar - 2017
    In this extract from the bestselling book Don’t Lose Out, Work Out!, Rujuta explodes many myths about exercising – spot reduction, weight training leading to brawn, the 100 Suryanamaskar routine, etc. – and pushes you to do it the right way, right away!

Prognosis: A Memoir of My Brain


Sarah Vallance - 2019
    The next morning, things take a sharp turn as she’s led from work to the emergency room. By the end of the week, a neurologist delivers a devastating prognosis: Sarah suffered a traumatic brain injury that has caused her IQ to plummet, with no hope of recovery. Her brain has irrevocably changed.Afraid of judgment and deemed no longer fit for work, Sarah isolates herself from the outside world. She spends months at home, with her dogs as her only source of companionship, battling a personality she no longer recognizes and her shock and rage over losing simple functions she’d taken for granted. Her life is consumed by fear and shame until a chance encounter gives Sarah hope that her brain can heal. That conversation lights a small flame of determination, and Sarah begins to push back, painstakingly reteaching herself to read and write, and eventually reentering the workforce and a new, if unpredictable, life.In this highly intimate account of devastation and renewal, Sarah pulls back the curtain on life with traumatic brain injury, an affliction where the wounds are invisible and the lasting effects are often misunderstood. Over years of frustrating setbacks and uncertain triumphs, Sarah comes to terms with her disability and finds love with a woman who helps her embrace a new, accepting sense of self.

Unwell Women: Misdiagnosis and Myth in a Man-Made World


Elinor Cleghorn - 2021
     Elinor Cleghorn became an unwell woman ten years ago. She was diagnosed with an autoimmune disease after a long period of being told her symptoms were anything from psychosomatic to a possible pregnancy. As Elinor learned to live with her unpredictable disease she turned to history for answers, and found an enraging legacy of suffering, mystification, and misdiagnosis.In Unwell Women, Elinor Cleghorn traces the almost unbelievable history of how medicine has failed women by treating their bodies as alien and other, often to perilous effect. The result is an authoritative and groundbreaking exploration of the relationship between women and medical practice, from the wandering womb of Ancient Greece to the rise of witch trials across Europe, and from the dawn of hysteria as a catchall for difficult-to-diagnose disorders to the first forays into autoimmunity and the shifting understanding of hormones, menstruation, menopause, and conditions like endometriosis.Packed with character studies and case histories of women who have suffered, challenged, and rewritten medical orthodoxy--and the men who controlled their fate--this is a revolutionary examination of the relationship between women, illness, and medicine. With these case histories, Elinor pays homage to the women who suffered so strides could be made, and shows how being unwell has become normalized in society and culture, where women have long been distrusted as reliable narrators of their own bodies and pain. But the time for real change is long overdue: answers reside in the body, in the testimonies of unwell women--and their lives depend on medicine learning to listen.

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.