When it comes to information on the Ehlers Danlos syndromes or EDS, the selections are pretty slim. As the disorder is still classified as rare (although it's NOT rare, it's just rarely diagnosed), there just aren't a lot of books about it out there. However, as awareness is increasing, the number of books has been slowly increasing as well. I put together a list of the best books to learn more about living with and loving someone with one of the Ehlers Danlos syndromes.
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By Kevin Muldowney
Book description from Amazon: 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.
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By Brad Tinkle
Book description from Amazon: 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.
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By Ti Bends
Book description from Amazon: I had never heard of Ehlers Danlos Syndrome and yet, I was born with it. Why then, was I only diagnosed in my 40's? In this book I look back at each decade of my life and highlight all the symptoms and signs that could have lead to a much earlier diagnosis. If only someone had taken the time to look at the big picture. Instead, the various doctors I saw over the years treated each symptom separately. They were looking at the trees - but Ehlers Danlos Syndrome is a forest!
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By Alexa Simmons
Book description from Amazon: The following story was written in 2010 by my daughter Alexa who passed away on October 11 2011 from complications due to Ehlers-Danlos Syndrome (EDS). Most people do not even know that EDS exists and, for that matter, most doctors unfortunately do not understand it and often diagnose it as a psychiatric issue versus a disease/illness. I hope this story increases awareness of EDS and related disorders – perhaps it will inspire people to understand that many diseases are not observable and that they need to be more compassionate towards others.
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By Janelle Shannon
Book description from Amazon: 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.
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By Philip Howard
Book description from Amazon: 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.”
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By Mysti Reutlinger
Book description from Amazon: An inspirational collection of stories, filled with devastation, heartbreak, triumph, and strength as written by those affected by different types of Ehlers-Danlos Syndromes.
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By Amy Maurer Jones
Book description from Amazon: Maybelle Dawson longs for normalcy and belonging. Often misunderstood, she struggles with a rare disorder, labeling her a Medical Zebra. Maybelle’s happiness and well-being threaten to slip through her fingers as she battles to take control of her life. She faces a never-ending battle on her journey to find love, courage and friendship in a world lacking acceptance. With the guidance of her guardian angel, Maybelle finds her way out of emotional and physical isolation to discover lasting love and amazing friendships. A Zebra Like Me is the story of one teenager’s battle with Ehlers-Danlos Syndrome, a disorder affecting one in five thousand people.
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By Hannah Ensor
A pocket sized book describing the symptoms and management of Hypermobility Syndrome with humour, cartoons and one-liners.
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By Joy Selak
Book description from Amazon: You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness chronicles a patient’s true-life accounts and her physician’s compassionate commentary as they take a journey through the three stages of chronic illness—Getting Sick, Being Sick, and Living Well. 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.
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by Isobel Knight
Book description from Amazon: 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.
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By Isobel Knight
Book description from Amazon: 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.
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By Michelle O'Sullivan
Book description from author website: A diagnosis of a hypermobility syndrome in children can be daunting, hard to understand and even harder to explain. This book aims to simplify that for children, parents and carers.
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By S. E. Smart
Book description from Amazon: Brace Yourself is a light-hearted look at the atypical life of ‘nice’ Lizzy, who doesn’t understand why her body and her men always let her down. Looking to regain control of her life in this rom-com with a twist, will Lizzy’s bright-side attitude finally attract the perfect partner? This isn’t a self-help book, but if you’ve lived with chronic illness you’ll identify with Lizzy’s struggles to stay upright in a world that knocks her down. We join Lizzy on her humorous journey through a series of painful disasters. With bad choices, bad men and bad Doctors behind her, Lizzy finally braces herself for a comfortable life.
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By Diana Jovin
Book description from Amazon: Disjointed is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare’s specialties often working against effective and efficient treatment. With 21 specialist & 6 resource chapters, Disjointed brings together physician, patient, and parent perspectives to support the goal of earlier and more complete intervention.
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10+ books about Ehlers Danlos Syndrome: https://bit.ly/2PB4vzr
You might also enjoy:
Aw, you missed out my book My Bendy Body: Living with Hypermobility www.mybendybody.com
ReplyDeleteThanks! I added it to the list!
DeleteAnother one for your list:
ReplyDeleteBrace Yourself: A chronically witty novel https://www.amazon.co.uk/dp/B07GKY52P9/ref=cm_sw_r_cp_api_-5aPBbW1C02C4
Thank you! I added it to the list.
DeleteThere’s also “Bendy Wendy” that was written by Dr. Brad Tinkle and his wife for children / teens going through diagnosis and treatment.
ReplyDeleteYou need to add Disjointed. It is expensive but worth every penny.
ReplyDeleteThank you! I just added it!
DeleteDisjointed
ReplyDelete