When it comes to learning about the Ehlers Danlos syndromes, or EDS, there aren’t many options out there to choose from. In fact, the disorder is still classed as rare, even though it’s not rare at all, but it’s only rarely diagnosed. There aren’t a lot of books about the disorder out there. However, as people become more aware, the number of books has been slowly rising as well. I put together a list of the best books to read if you want to learn more about living with or caring for someone who has one of the Ehlers Danlos syndromes.
Living Life to the Fullest with Ehlers Danlos Syndrome
By Kevin Muldowney
Amazon has a description of the book: For more than a decade now, Kevin Muldowney, MSPT has been treating people who have the condition Ehlers-Danlos Syndrome. As a physical therapist, he has come up with an exercise plan that can help stabilize the many joint subluxations and dislocations that this genetic disorder causes. This book is for people who have been diagnosed with EDS. It tells them about the health care team that should be there to help them, as well as how to follow the Muldowney exercise protocol with their physical therapist. This book will talk about how joints move in this group, how to find the right physical therapist, how to exercise without getting hurt, and which physical therapy techniques work best. This protocol should help people with EDS learn more about their bodies and how to make them better.
Joint Hypermobility Handbook
By Brad Tinkle
Amazon has a description of the book: In the same way that his best-selling book, “Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome,” was a best-seller, Dr. Tinkle has written a follow-up handbook with several contributors to help people better understand and manage the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome.
Joining the Dots…the Story of How I was Finally Diagnosed with Ehlers Danlos Syndrome in My 40’s
By Ti Bends
Amazon has a description of the book: I’d never heard of Ehlers Danlos Syndrome, but I was born with it, so I had it from birth. In that case, why did I only get checked out in my 40s? During this book, I look back at each decade of my life and show all the symptoms and signs that could have led to a much earlier diagnosis, like when I was younger. If someone had taken the time to look at the big picture, things would have been different. Instead, each symptom was treated by a different doctor I saw over the years. Their attention was drawn to the trees, but Ehlers Danlos Syndrome is like a forest!
Being Built Wrong
By Alexa Simmons
Amazon has a description of the book: It was written by my daughter Alexa in 2010, and she died from Ehlers-Danlos Syndrome on October 11, 2011. The story was written in 2010. (EDS). Sadly, most people don’t even know that EDS exists, and most doctors don’t know what it is or how to treat it. They often treat it as a psychiatric problem instead of a disease or illness. I hope this story will help people learn more about EDS and other disorders that aren’t visible, and that they need to be more kind to other people.
Special Like Me: Ehlers Danlos Syndrome
By Janelle Shannon
“Special Like Me” is the title of a book on Amazon. Ehlers-Danlos Syndrome is made to help parents, caregivers, and professionals have better conversations with kids who have Ehlers-Danlos Syndrome (EDS). He goes from bumps and bruises to being diagnosed and even more. This book is about his journey from there. Show people with EDS and other kids how beautiful they are. They can do anything if they put their minds to it.
An Accident Waiting to Happen
By Philip Howard
Amazon has a description of the book: There is no proof that I have hemophilia. It was said that I was clumsy, a clown, and an accident in the making. They were not right. As a result, I’ve had a lot of injuries, including 200 stitches, a fractured femur and broken bones in my feet. I’ve also had several dislocated kneecaps, knee ligaments torn, a broken scaphoid, and a dislocated shoulder. These are the gifts that the EHLERS DANLOS SYNDROME gave to me as a thank you. Fifty eight years old, I was done. During this time, I lay on the floor of my garage and listened to the siren of an ambulance as it came toward me. : “I have to find a way to stop this.” As long as I live,
Our Stories of Strength – Living With Ehlers Danlos Syndrome
By Mysti Reutlinger
Amazon has a description of the book: Inspirational stories written by people who have Ehlers-Danlos Syndromes. They include stories of heartbreak, triumph, and strength written by people who have different types of the syndromes.
A Zebra Like Me
By Amy Maurer Jones
Amazon has a description of the book: Maybelle Dawson wants to be normal and be part of a group. She has a rare condition that makes her a “Medical Zebra.” She is often misunderstood. Maybelle’s happiness and well-being could slip through her fingers as she fights to take charge of her life. She has to fight for love, courage, and friendship in a world that doesn’t like her. With the help of her guardian angel, Maybelle gets out of emotional and physical isolation to find love and friendships that last a long time. It’s the story of a teenager who has Ehlers-Danlos Syndrome, which affects one in five thousand people. A Zebra Like Me is about that person.
You Don’t Look Sick
By Joy Selak
Amazon has a description of the book: You don’t look sick!: Living Well with Invisible Chronic Illness tells the stories of a patient and her doctor as they go through the three stages of chronic illness: getting sick, being sick, and living well. This resource helps you build a meaningful life that includes illness, rather than a life that is filled with stress and fear. This book is for people who have chronic illnesses at all stages of their journey. It will also be helpful for caregivers and loved ones.
A Multidisciplinary Approach to Managing Ehlers Danlos (Type III)
by Isobel Knight
Amazon has a description of the book: This book gives an overview of what it means to be a chronic complex patient. It looks at the wide range of physical and psychological effects that EDSIII and other conditions like endometriosis and fibromyalgia have on people. It looks at the exercise and rehabilitation work that is needed to keep the condition under control. It also looks at a wide range of medical treatments and complementary approaches, like physiotherapy, Bowen Technique, and Feldenkrais Method (R). There are contributions and insights from experts in the fields of physiotherapy, rheumatology, and health psychology all over the book. They all have a lot of experience working with complex chronic patients.