Kevin Muldowney, MsPT has been treating people with Ehlers-Danlos Syndrome since 2005. As a physical therapist, he has developed an exercise protocol to help stabilized the many joint subluxations/dislocations associated with this genetic disorder. This book is intended for the person diagnosed with EDS to both inform them about the healthcare team needed to properly treat them as well as to guide both the physical therapist and their patient with EDS through the Muldowney exercise protocol. This book will cover such topics as: how joints sublux in this population, how to find the right physical therapist, how to exercise without injury and what physical therapy techniques works best. By the end of this protocol people with EDS should be better informed about what is going on with their body and how to make it better.
A leading expert in connective tissue disorders presents a primer to encourage dialogue between patients and their health care providers in order to create an individualized treatment plan addressing the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobile Syndrome.
Covering everything from recognising symptoms and obtaining initial diagnosis to living with the condition on a daily basis, this complete guide to living with and managing Ehlers-Danlos Syndrome (Hypermobility Type - formerly known as Type III) has been revised and fully-updated in this accessible new edition. 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 terminology information on how osteopathy and nutrition can help psychological approaches beyond CBT how to deal with professionals what to expect from support groups and rehabilitation programmes This 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.
This groundbreaking new text explains and documents the scientific basis of chronic pain in Joint Hypermobility Syndrome (JHS) and other heritable disorders of connective tissue from the physiological, epidemiological, genetic and clinical viewpoints. It asks the reader to consider the possibility of JHS, identify it clinically, understand its co-morbidities, including interdependencies with Fibromyalgia and Chronic Fatigue Syndrome, while managing the condition appropriately. Hypermobility, Fibromyalgia and Chronic Pain takes a multi-specialty and multidisciplinary approach to understanding JHS and its management, drawing together expertise from a broad group of internationally-recognized authors. The book is split into two sections. Section 1 deals with the clinical manifestations of JHS and Fibromyalgia, their epidemiology and pathophysiology. Section 2 covers clinical management. Here the reader will find chapters covering pharmacotherapeutics, psychotherapy and physical therapies that address the needs of patients from childhood to adulthood. It is hoped that Hypermobility, Fibromyalgia and Chronic Pain will advance knowledge of therapies and provoke further research while stimulating interest and encouraging debate. Comprehensively relates practical therapy to the nature of the underlying pathology Covers in one single text both the scientific and practical management aspect of Joint Hypermobility Syndrome and its allied pathologies Contributions from over 30 leading international experts Multidisciplinary approach will support all health professionals working in this field
As a followup to his previous best-selling book, "Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome," Dr. 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.
The complex effects of Ehlers-Danlos Syndrome (Type 3, Hypermobility), or EDSIII, on a patient's physical and mental wellbeing are extremely challenging for everyone involved, requiring a multidisciplinary care team and enormous dedication from the patient. This book presents an overview of what it means to be a chronic complex patient, examining the wide range of physiological and psychological implications associated with EDSIII and other conditions such as endometriosis and fibromyalgia. It explores the exercise and rehabilitation work involved in managing the condition effectively, considering a diverse range of medical treatments and complementary approaches including physiotherapy, Bowen Technique and Feldenkrais Method(R). There are contributions and insights throughout from experts in the fields of physiotherapy, rheumatology and health psychology, all of whom have extensive experience of working with complex chronic patients. The author links her own symptoms and experiences to those of other EDSIII patients and discusses how she has been able to reach a point where she can successfully manage the condition. This book will be essential reading for professionals working with EDSIII and other complex conditions including medical professionals, physiotherapists, occupational therapists, psychologists, counsellors and complementary therapists, and will be of interest to patients with EDSIII wanting to learn more about effective management of the condition.
My Eds Journey
Author: Bradley Tinkle
Individuals with EDS have a defect in their connective tissue, the result of faulty collagen. Now a world-renowned expert and clinical physician for EDS offers patients with this complex disorder a way to organize and centralize their medical data in a way that best serves patients and their healthcare providers.
Author: Rosemary Keer, Rodney Grahame
Discusses the implications of generalised joint hypermobility and helps the reader to recognise and identify when the hypermobility syndrome is present. It goes on to describe in detail the assessment and management of the syndrome from children through to adults, and it includes sections on relevant ergonomics, rehabilitation and fitness. Also included is information on where the hypermobility syndrome fits in with other connective tissue disorders.
Zebras of Hope
Author: Ellen Kelleher
This book was written for those diagnosed with Ehlers-Danlos Syndrome. It can be difficult to navigate the complexities of this condition, and I hope this book will help to prepare you to take on the challenge of living life after the diagnosis. We are born with EDS, yet finally receiving a diagnosis is devastating to many of us. This book includes some personal stories, so that you will be able to see how others have dealt with the diagnosis and learned to live their lives as they have faced the challenge of EDS and overcame the obstacle of self-pity, to move forward into a new life. Faith is the backbone of this book and I hope that through faith you will also learn to cope with EDS.
The doctors said I had unconfirmed haemophilia. People said I was clumsy, a clown, an accident waiting to happen. They were wrong. I have endured a multiplicity of injuries including: 200 stitches; a broken femur; broken bones in my feet; 3 sprained ankles; several dislocated kneecaps; ruptured knee ligaments; a broken scaphoid; traumatic bruising to my shin and a dislocated shoulder. These are the presents that EHLERS DANLOS SYNDROME bestowed upon me. At fifty eight years of age I had had enough. I lay on the floor in my garage with the fallen ladder as my companion, listening to the siren of an approaching ambulance. I thought to myself "I have to find a way to make all this stop. If I survive."
It Hurts Like Hell!
Author: Ellen Smith
At age forty-eight, something went seriously wrong with my body. Suddenly, I couldn't work, swim, or even walk. I felt betrayed, my life cut so short. What would YOU do? Now, I have a body that falls apart. This triggers unbearable pain that also causes dizziness, brain fog and disconnect. And the thought that hurts me most-is that this will only get worse! Every day is a challenge. I would wither if I felt sorry for myself. I choose to find happiness in my day, I reach out to try to help others. I consider myself lucky (no kidding!) despite this tough "gift" that was given me to live with. I accept that life remains a gift each day to treasure. DO YOU BELIEVE ME? Accept the challenge in the book, and try to walk in my shoes.
In one single moment, everything can change. What lurks inside the deepest depths of David Malarky threatens his entire existence.... Vascular Ehlers-Danlos Syndrome: The Journey Begins charts the story of David Malarky as he uncovers a truth that has gone undetected in his family for generations. An unknown monster with the power to take a life in the blink of an eye. As David unmasks the savage beast within, he must come to terms with the consequences of being diagnosed with a rare genetic disorder. With little help and little hope, he must overcome and fight back in the challenge to stay alive. The journey begins.....
Special Like Me...
Author: Janelle L. Shannon
Publisher: Createspace Independent Publishing Platform
Special Like Me... Ehlers-Danlos Syndrome is uniquely designed to assist parents, caregivers, and professionals facilitate conversations with children who have Ehlers-Danlos Syndrome (EDS). This book is about a little boy's journey from bumps and bruises to diagnosis and beyond. The goal is to show EDSers and other children they are beautiful and amazing people that they can manage anything they set their mind to.
Hell in the Head
Author: David Douglas Shannon
He got sucker-punched, blindsided with something that only happens to other people. Actor David Shannon had a brain tumor. It was called an Acoustic Neuroma. In late 2007, he had surgery to have it removed. All should have gone well. It didn't. Gradually over the next two years, Shannon made one disturbing discovery after another that left his acting career and his former life in ruin. Hell in the Head is his story. With a knack for story-telling, Shannon takes us along on his medical misadventure with irreverent wit. As he weaves his way through his newly found post-surgery world, he shares heart-rending losses and his dashed hopes for recovery as well as stories of achievement and inspiration. From learning the bitter truth to running a half marathon to meeting Crookedsmile and others facing the same ordeal, Shannon tells the good and the ugly with the same wry humor that will have you laughing and crying at the same time. In the end, after a three-year-ride on a rollercoaster of emotional chaos, he presents an advocacy for improved care and counseling for Acoustic Neuroma patients. Hell in the Head is a story of wit and inspiration for all readers and a must read for Acoustic Neuroma patients and "posties."
Unlike a leg in a cast, invisible chronic illness (ICI) has no observable symptoms. Consequently, people who suffer from chronic fatigue, chronic pain, and many other miseries often endure not only the ailment but dismissive and negative reactions from others. 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.