Books on Ehlers-Danlos Syndrome
With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We are starting today with our favorite books! Whether that’s medical books, fiction, children or young adults, there is a book for everyone! This is meant as a community-centered list. We have not read all books but are sharing all resources we think may be helpful for our community in an alphabetical manner. Let us know in the comments whether you found one of our recommendations helpful or not and if you have further resources we should add.
Non-Fiction Books
EDS
A Guide to Living with Ehlers-Danlos Syndrome by Isobel Knight
“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.”
A Multidisciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome: Working With the Chronic Complex Patient by Isobel Knight
“Ehlers Danlos-Hypermobility Syndrome is a challenging condition which is often misunderstood and misdiagnosed. This book looks at how physiotherapy can provide effective and lasting relief for sufferers. The book explains how EDHS is diagnosed and how a physical assessment of the patient should be carried out. It shows how physiotherapy can systematically work through the body inside out to relieve symptoms commonly associated with EDHS such as muscle weakness, chronic pain, sleep disorders and irritable bowel syndrome (IBS). From the perspectives of physiotherapist and patient, the authors reflect on how and why they managed to achieve a vastly improved quality of life for Isobel.”
Disjointed by Diana Jovin
“Disjointed is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an under recognized, complex, multisystemic disorder, with the silos of healthcare’s specialties often working against effective and efficient treatment. With 21 specialist and resource chapters, Disjointed brings together physician, patient, and parent perspectives to support the goal of earlier and more complete intervention.”
More information: https://hiddenstripes.com/
Holding It All Together When You’re Hypermobile: Achieve a Better Life Experience with EDS, POTS, and Joint Instability by Christie Cox
“A practical patient-perspective guide for dealing and healing with hypermobile Ehlers-Danlos syndrome (EDS), POTS, and comorbidities.”
Read the interview with Christie Cox: https://www.chronicpainpartners.com/author-christie-cox-about-her-new-eds-book-holding-it-all-together-when-youre-hypermobile/
Or find our book review here: https://www.chronicpainpartners.com/book-review-holding-it-all-together-when-youre-hypermobile/
Hypermobility Without Tears: Moving Pain-Free with Hypermobility and EDS by Jeannie Di Bon
“Hypermobility Without Tears is a step-by-step guide to help people with hypermobility and Ehlers-Danlos Syndrome (EDS) learn how to move pain-free and effortlessly. A movement therapist and hypermobility specialist with over a decade of education, research, client practice and Pilates teaching, Jeannie is an expert in the field of movement. Her own experience of hypermobile EDS, leaves her uniquely qualified to guide people with hypermobility and EDS back to movement and a ‘no pain, no strain’ lifestyle. Having suffered through years of misdiagnosis and pain, Jeannie truly understands the ‘hypermobile body’ and her book offers empathetic guidance on how to listen to the body and learn to move without pain. Hypermobility Without Tears is arranged into six sections based on Jeannie’s key principles of pain-free movement for the hypermobile body: breath, relaxation, proprioception, stability, balance and posture.”
Read our interview with Jeannie Di Bon: https://www.chronicpainpartners.com/jeannie-di-bons-zebra-club/
Joint Hypermobility Handbook – A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome by Brad Tinkle, MD
“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.”
Living Life to the Fullest with Ehlers-Danlos Syndrome by Kevin Muldowney
“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.”
Symptomatic: The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders by Clair A. Francomano, Alan J. Hakim, Lansdale G.S. Henderson, Fraser C. Henderson Sr.
“Symptomatic: The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach to the subject, structured around the panoply of symptoms those with Ehlers-Danlos syndromes and hypermobility spectrum disorders may describe to their clinicians. The content is arranged intuitively from head to feet. Each chapter integrates a clinical case study with a concise discussion and two important tools: a simplified algorithm for diagnosing and managing each symptom; and differential diagnoses (i.e. alternative explanations) for the symptoms. Combining the expertise of some 70 leading clinicians representing more than 30 specialties, the content is suited for clinicians who need a concise presentation of the various and complex symptoms they confront in their practice. It also aims to inform and empower patients, helping them understand the nature of these concerns and their management. This handbook advances an integrative understanding of this emerging interdisciplinary field, bridging the gaps between the several dozen specialties germane to EDS and HSD.”
The Trifecta Passport: Tools for Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome by Amber Walker
“The “trifecta” refers to three conditions that commonly occur together: mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS) and the hypermobile type of Ehlers-Danlos syndrome (hEDS). These three conditions are gradually becoming more recognized in the mainstream medical world as more and more patients find themselves struggling with debilitating and often mysterious symptoms. However, recognizing these conditions is only the first step on the healing journey. With the right approach and toolbox, patients can reverse many of these symptoms to find lasting vitality. Written by a Doctor of Physical Therapy who has additional certifications in functional medicine and nutrition and extensive experience in working with these conditions, this book serves as patient guide that empowers individuals to put all of the puzzle pieces together as part of an individualized healing plan.”
Transforming Ehlers-Danlos Syndrome: A Global Vision of the Disease – The Epigenetic Revolution by Stéphane DAENS
“”Transforming Ehlers-Danlos Syndrome” : What is the disease’s history? What are its clinical signs and symptoms? Is Ehlers-Danlos Syndrome really that rare? Is it necessary to modify the disease’s current classification? How is it transmitted to children? How does it evolve over the course of a lifetime? How is it managed? What treatments are available to help patients improve their quality of life? How can confusing emergency situations for both patients and caregivers be managed?”
Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders by Claire Smith
“Whether you are newly diagnosed, or a patient or healthcare professional this ground breaking book, reviewed by leading experts and reflecting the most up to date knowledge from the EDS International Classification 2017, brings together all the information you most want to know about ‘hypermobile Ehlers-Danlos syndrome’ and ‘hypermobility spectrum disorder’. Edition 2, published In January 2024, also includes the recently defined 2023 Diagnostic Criteria for Paediatric Joint Hypermobility.”
Comorbid Conditions
Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome by Amber Walker
“At 542 pages and referencing over 1200 academic articles, this book is the longest and most thorough resource on mast cell activation syndrome (MCAS) to date. Allergies and anaphylaxis are on the rise, alongside gastrointestinal problems, skin issues, fatigue, orthopedic pain, neurological symptoms, and just about everything in between. Patients are coming out of the woodwork with chronic, debilitating, often invisible illness. Recent research estimates that 14%-17% of the population may have mast cell activation disease. Much of the medical community has never heard of the condition, and existing mainstream treatment tends to focus predominantly on pharmacological management. However, once a patient has reached a stable baseline, there are a number of other individualized approaches that can guide patients to successfully address the underlying root issues.”
Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Lawrence B. Afrin, Kristi Posival
“In 2008 Dr. 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 Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Patients Kindle Edition by Kelly Freeman, David Goldstein, Charles Thompson
“”The Dysautonomia Project: For Patients” is a much-needed tool for patients or caregivers looking to arm themselves with the power of knowledge. It combines current publications from leaders in the field of autonomic disorders with explanations for patients about the signs and symptoms, which will aid in reducing the six-year lead time to diagnosis.”
Dysautonomia, POTS Syndrome: Diagnosis, symptoms, treatment, causes, doctors, nervous disorders, prognosis, research, history, diet, physical therapy, medication, environment, and more all covered! by Frederick Earlstein
“Dysautonomia, POTS Syndrome affects many people. This books aims to provide the information sought out by those people who suffer. Frederick Earlstein has written this medical education guide to provide an understanding of Dysautonomia, POTS Syndrome including POTS and Associated Disorders, signs and symptoms, causes and treatment, living with POTS, research and resources, and medical definitions.”
Others
The Invisible Kingdom by Meghan O’Rourke
“A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier.”
Read our interview with O’Rourke: https://www.chronicpainpartners.com/meghan-orourke-and-the-invisible-kingdom/
Fiction
Children Books
Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book by Pey Carter, Abigail Bailey), Katarina Stevanović
“Inspired by the author’s real-life story about Ehlers-Danlos, this disability inclusion book for kids follows Abigail as she’s diagnosed with an invisible disability—and her friends come together to support her.”
Read our interview with the authors: https://www.chronicpainpartners.com/pey-carter-and-daughter-abigail-speak-about-their-eds-childrens-book/
Special Like Me…: Ehlers-Danlos Syndrome by Mrs. Janelle L. Shannon LCSW
“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.”
The Bendy Twisty Zebra Taschenbuch by Kimby Maxson, Ron Houchens
This is the story of Rose as she navigates the myriad of symptoms that are a result of the genetic disorder she lives with. It is a story of strength, courage, compassion and most of all friendship. Rose and her friends learn that they might not be perfect but together they will all be okay. Rose lives with Ehlers Danlos but this story applies to all of us and all of our imperfections. It is a reminder that loving, supporting and accepting each other can make all the difference in the world.
Read our book review: https://www.chronicpainpartners.com/book-review-the-bendy-twisty-zebra-by-kimby-maxson/
Young Adult
Fight + Flight by Jules Machias
Avery Hart lives for the thrill and speed of her dirt bike and the pounding thump of her drum kit. But after she’s diagnosed with hypermobile Ehlers-Danlos syndrome, a disease that affects her joints, Avery splits her time between endless physical therapy and worrying that her fun and independence are over for good.
Sarah Bell is familiar with worry, too. For months, she’s been having intense panic attacks. No matter how much she pours her anxiety into making art, she can’t seem to get a grip on it, and she’s starting to wonder if she’ll be this way forever.
Just as both girls are reaching peak fear about what their futures hold, their present takes a terrifying turn when their school is seemingly attacked by gunmen. Though they later learn it was an active shooter drill, the traumatic experience bonds the girls together in a friendship that will change the way they view their perceived weaknesses—and help them find strength, and more, in each other.
Read the book review here: https://www.chronicpainpartners.com/book-review-fight-flight-the-new-middle-grade-book-featuring-a-character-with-eds/
Fourth Wing & Iron Flame by Rebecca Yarros
Enter the brutal and elite world of a war college for dragon riders from USA Today bestselling author Rebecca Yarros Twenty-year-old Violet Sorrengail was supposed to enter the Scribe Quadrant, living a quiet life among books and history. Now, the commanding general—also known as her tough-as-talons mother—has ordered Violet to join the hundreds of candidates striving to become the elite of Navarre: dragon riders. But when you’re smaller than everyone else and your body is brittle, death is only a heartbeat away…because dragons don’t bond to “fragile” humans. They incinerate them.
With fewer dragons willing to bond than cadets, most would kill Violet to better their own chances of success. The rest would kill her just for being her mother’s daughter—like Xaden Riorson, the most powerful and ruthless wingleader in the Riders Quadrant.
She’ll need every edge her wits can give her just to see the next sunrise. Yet, with every day that passes, the war outside grows more deadly, the kingdom’s protective wards are failing, and the death toll continues to rise. Even worse, Violet begins to suspect leadership is hiding a terrible secret.
Friends, enemies, lovers. Everyone at Basgiath War College has an agenda—because once you enter, there are only two ways out: graduate or die.
März 2024
Karina Sturm
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Ooh, great list! I see a couple of new ones to me for the win! It’s great to see word spreading and more books available for all audiences about EDS now – medical, non-medical, kids. Thanks for posting this!
There might be a couple on my list here you can add too: https://ohtwist.com/eds-resources/recommended-books
Thanks, Jan! Best, Karina