A Guide to Living with Hypermobility Syndrome: Bending without Breaking

by Isobel Knight, Alan J. Hakim (Foreword)

People with Hypermobility Syndrome (HMS), including Ehlers-Danlos type Hypermobility Syndrome, have a larger range of joint movement than is typical, which can cause pain and fatigue despite an outward appearance of good health. This book is the complete guide to living with and managing HMS, and ultimately enjoying a fulfilling life. The book covers everything from recognising symptoms and obtaining initial diagnosis to living with the condition on a daily basis and managing its negative effects. The author, who has HMS herself, looks at how the condition affects children and adolescents, before moving on to explore pain management (including the use of physiotherapy, pilates and a selected range of complementary health therapies), pregnancy, physical and psychological aspects of the condition, and how it widely affects dancers and other performance artists. Wider conditions that encompass Hypermobility Syndrome are also touched upon, including Fibromyalgia and IBS. This book will be a must for anybody who suffers, or suspects they might be suffering from, Hypermobility Syndrome. It will also be of interest to their families and friends, and professionals working with the condition.

Genres: Nonfiction, Health, Medical, Reference, Disability, Science, Psychology

240 pages, Paperback

First published July 15, 2011

Reviews

[Sandra "Jeanz" · Rating 5 out of 5]

INITIAL THOUGHTS
So initial thoughts upon finishing this book; Truthfully I have felt a whole range of emotions from feeling useless and perhaps somewhat depressed, to feeling understood, and been given hope that if you ask loud enough and go along with information from this book that maybe there is help out there.

MY REVIEW
This is a great book for anyone both newly diagnosed and those who have had a diagnosis a while.. The book is written with knowledge of the problems we suffer from. Myself and my 19 year old daughter have Ehlers Danlos Syndrome Hypermobility Type so I know how useful this book is first hand, it should be read by all Doctors, Gps, Nurses, Physiotherapists etc. This book is informative, factual, written in terms that a "normal" "non medical" person can easily understand. It answers the questions that a person with this syndrome asks, but may not receive forthcoming answers from the medical profession around them..
So my thoughts upon finishing this book; truthfully I have felt a whole range of emotions from feeling useless and perhaps somewhat depressed, to feeling understood, and been given hope that if you ask loud enough and go along with information from this book that maybe there is help out there. I honestly feel a little more positive about going to the Rehabilitation centre at my local hospital to see an occupational therapist for help and perhaps referrals to other departments that could help too.
Sadly the NHS no longer has a specialist centre at Leeds and my quota of occupational therapy at my local hospital got me some advice on finger splints, I was given wrist splints, for one wrist (I've since bought a splint for my other wrist) and compression gloves but then I had used my time up. So this is a daily struggle I have to . . . as the rheumatologist that finally diagnosed me said "Learn to live with your condition."
This book is full of useful information, so I would recommend it to those who have EDSHT.

[Gayle · Rating 5 out of 5]

This was the first book on EDS that I read after being diagnosed with it and it was like coming home--at last I found a description and explanation for what I've lived with for sixty years. Written by someone who herself has EDS, it is helpful because of the comfort factor in addition to the information she shares. The author is English so her references to health care systems and terminology can be a bit confusing but it's not prohibitive. Highly recommended.

[Justin · Rating 5 out of 5]

I received this book, for free, in exchange for an honest review.

I probably do not have EH-DS. I probably have another hypermobility syndrome like Marfan's.
I read this book to learn more about EH-DS, determine whether or not I have it, and see if there was any health advice that would benefit me.

I found the book to be incredibly well written. This book reads like it could be the definitive resource for EH-DS.

The only thing I found somewhat lacking was the conclusions. I was hoping there would be something one could do to reverse the disease. If EH-DS is related to collagen,for example, I would think there would be certain dietary adjustments that could be made (I believe there are supplements that purport to do this... I would think they merit a mention even if it is to say they don't work). Don't get me wrong the author had many suggestions (mostly related to physical manipulation/strengthening) that would help people with EH-DS. Based on the thoroughness the author exhibits I would assume that there are no other useful treatments. I just hoped that wasn't the case.

[Tria · Rating 4 out of 5]

Better than most, but more driven by personal experience than is that interesting for someone else with the condition who experiences it differently. Also, in terms of treatment, not all that helpful for pople who live outside London (but what is?).

[Jaclyn B. · Rating 4 out of 5]

This is a great resource for anyone living with EDS-HT. Having read Isobel’s second book first, I feel like that one offered better practical advice in both what to expect in living with EDS, as well as ways you might possibly get some stability in your life.

I felt this volume was better for people first getting diagnosed, or for family members who are struggling to understand what your condition entails. Having been diagnosed for several years, I felt that this one did not offer quite the knowledge I was looking for, or covered things I was already aware of.

I did really appreciate the quotes from other people with EDS of all ages, as it gave a broader perspective.

[Colette · Rating 4 out of 5]

Dit boek voelt als thuiskomen. Dingen die je misschien nooit begreep of waarvan je dacht de ze zo (ab)normaal waren, krijgen eindelijk een betekenis, een verklaring, een (h)erkenning.
Blijkbaar hoort schrijven op school tijdens de lessen helemaal geen pijn te doen, blijkbaar is het normaal dat je op veel latere leeftijd begint te lopen en ben je geen saai/passief kind maar gewoon extra voorzichtig omdat jouw lijf niet oké/stabiel voelt.

Het ideale boek voor zorgverleners, leerkrachten, familie, vrienden of mensen die zelf te maken hebben met EDS-HT.

Healing without breaking: letterlijk en figuurlijk.

[Chloe · Rating 4 out of 5]

Although I don’t have EDS, I have some level of hypermobility and this book has great detail on the science behind it, how it works and how to manage both physical and mental aspect of it. I earmarked a bunch of pages while reading, but one of the statements that resonated with me was “pain does not equal damage.” That’s going to stick with me as I attempt to create a program to help me manage what I got!

[Amy · Rating 4 out of 5]

This book was very helpful for me, as it reaffirmed many of the issues I deal with because of hEDS. It has made me feel less isolated.

[Maili Knox · Rating 3 out of 5]

I think I would have been less disappointed by this book had it been titled more accurately. The bulk of the evidence-based, informative content can be found in the first half of the book, which primarily focuses what EDS is and how it's identified. Being a guide to "living with" EDS, I would expect that most readers already know they have EDS and have at least a basic understanding of what it is. And not to dismiss the effort that the author put into the book, but most of this info can be easily found online.

The second half of the book is geared more towards actual strategies for managing EDS symptoms, but becomes increasingly subjective and centered around the author's own experiences. I really think there should be some sort of disclaimer, in the title or at least the description, noting that most of these recommendations are not applicable to those living outside of the UK (there was actually a blurb somewhere stating that hEDS is not diagnosed in the US, which isn't true).

Even when her suggestions were more universal, the bottom line of most of these sections was basically "you should consult a medical professional before attempting and for more personalized guidance." Suffice to say, if I had access to doctors I could afford who understood EDS, I probably would not have resorted to this book to begin with.

Given how differently each person experiences EDS, a fact that the author notes numerous times, I was surprised by how much of this just covered personal experience. Some potentially useful bits of info were glossed over, while other sections (i.e. the chapter on Dancers with EDS) describe the author's very specific injuries and treatment in great detail. I'm curious to know whether those who requested the added chapter on sports other than dance were satisfied with this added content - as it was basically a list of sports we are all familiar with, each with a small blurb about what those activities are like for the author herself.

I don't mean to go in on one of the only books on hEDS - making it an undeniably important first step for people with this condition - but I honestly felt like new info I picked up (having only begun researching EDS myself just a month or two ago) was greatly outweighed by the alienation I felt reading so much about my condition that doesn't even apply to my experience.

I might recommend this "guide" to those living in the UK who have access to quality healthcare but aren't sure where to start. Otherwise, I think more tailored content can be found online (the Ehlers Danlos subreddit is a good place to start)

[Victoria W. · Rating 5 out of 5]

As someone who is officially diagnosed with Ehlers-Danlos (either the same or a close related condition depending on which medical professional you ask) I was curious to uncover the opinions and research of someone who has walked the journey of complex, chronic illness longer than myself.

I was not disappointed.

I truly wish every single one of my medical professionals I interact with would read this book in the hopes they could gain even a percentage of the empathy and knowledge stored within the pages. This book really is a must read for any who struggle with a condition that is marked with hypermobility as one of its defining features.

Why is this book so good?

First of all, it's organized for easy reference. Thank you! A book that's easy to navigate will simply be used more often and thanks to Knight's clear categories and logical ordering this book is a breeze to sort through.

Second of all, this book takes first hand experience into account. When facing hypermobility whether HMS, EDS, or something else, being understood as a person, as a patient, and as a reliable source of information is so rare. The way Knight weaves personal experience, both her own and others she has encountered, enriches and deepens the conversation laid forth.

Thirdly, Knight doesn't shy away from important topics such as mental health and feminine issues.

Living with Hypermobility Syndrome is a valuable resource for patient, professionals, and loved ones of those living with one of these conditions.

[Lauren · Rating 3 out of 5]

I found this book to be a useful - if not enjoyable - read. It's a good starting point for anyone wanting or needing to learn more about HMS/EDS types involving hypermobility, and for the hypermoble patient, it does a very good job communicating that you are not alone, nor are you a hypochondriac. It's the kind of book that's medical but in layman's terms - it's exactly the type of book I wish doctors and physical therapists would read, as I think they may then be more cognizant of the realities their patients face.

The one thing that bothered me with this book was the Resources section; it's not going to be of much use to anyone living outside of the UK, as nearly all of the resources mentioned are in London. As a US-based patient, they're unfortunately of no use to me.

[Amanda · Rating 4 out of 5]

As a sufferer of Ehlers-Danlos Syndrome I found this book extremely helpful in understanding the multi-systemic nature of it and the range of symptoms it can cause, to the different management strategies and techniques. Hearing Isobel Knights personal experiences and story helps you relate it to what you are going through and it is definitely a book I will keep referring to for guidance and advice in managing the condition as well as showing elements to my health professionals. I would recommend this book to any with HMS/EDS, medical professionals to learn more about the condition and anybody who wants to learn more in order to support a friend or family member.

[Elizabeth · Rating 5 out of 5]

This book was very informative. I was diagnosed 3 years ago and yet I learned so much. There is very little support in the U.S. for those with hypermobility and so this book provided me with some much needed information.

[Ellis Spicer · Rating 5 out of 5]

Cannot explain how much I relate to this book and how useful I have found it as a Hypermobility Syndrome sufferer. Recommend for those who have HMs who want to know about their condition more and understand in more detail what they can do to help themselves

[Josephinelisetta · Rating 5 out of 5]

Explains joint hypermobility in an accessible way without sugarcoating or whining.

[Suzanne · Rating 4 out of 5]

It helped me a lot to understand my own body.

[Melanie · Rating 2 out of 5]

I can understand how this might have been super useful when it first came out. My read found it less useful. I was not yet diagnosed so seeing horror stories of how bad it COULD be mostly just made me feel a fool for pursuing a diagnosis, that I must not have it since my situation wasn't that bad. It suggested resources that aren't very available to me. I've found the support groups much more helpful in terms of understanding why I might suffer as much fatigue, suggesting MCAS and dysautonomia and all the comorbidities that come along.

So far my best reads on the topic are "Too Flexible to Feel Good" for good hypermobility body care (that could actually be useful information for the general population as well) and "Disjointed" which is much more thorough and technical.

[Kei · Rating 4 out of 5]

Informative, but deeply depressing...

Weirdly, though I have done a ton if research into a variety of conditions for clients, this was the first deep look into my own that I have done.

There is quite a bit of useful information in here, and some of it helped me to deal with the winter plague I am currently experiencing.

However, it also showed the stark differences between healthcare in the UK... And in the US.

[Olivia Elvesson · Rating 5 out of 5]

During the past four months since receiving my diagnosis of hEDS, I’ve tried to gather as much information as possible. This is the first book I’ve read on the subject, and it was great seeing a bunch of information packed together in one text. Reading it was like looking in a mirror - extremely validating. A great introduction to hEDS and some comorbidities, easy to read and understand.

[Art Thomas · Rating 3 out of 5]

Not a bad book, but I would've liked to seen more on self-care considerations and less on unproven treatment varieties. Most of the resources are aimed at the UK, but it's certainly not the author's fault that I exist in America.

[Ruth · Rating 5 out of 5]

And just like that ... your whole life starts to make sense.
Very helpful book, very clear language, very patient-oriented. Maybe a little outdated in places relation to more recent research but still would recommend!

[Cyndi · Rating 4 out of 5]

Although I have a different type of EDS I still found the book to be generally informative. I learned about some different types of non mainstream therapies I had not heard about before.

[Emily · Rating 3 out of 5]

Perhaps good for someone newly diagnosed but not the first book I'd recommend to someone. Not as up to date as it could be.

[Claire Reviews · Rating 3 out of 5]

Review: A Guide to living with hypermobility Syndrome by Isobel Knight I wanted to read this book as I have Benign Joint Hypermobility Syndrome. The book is fairly modern and has interesting and informative content. It's also one of the only books I've found that appears to encompass all types of hypermobility, rather than just Ehlers-Danlos Syndrome.
I think this book would be a useful guide for anyone living with any form of hypermobility.

[Michelle · Rating 4 out of 5]

I only read the pertinent information so it was a quick book to read. A lot of the info I've already read online but it was a nice intro and summary of the syndrome and it was also nice to read first hand accounts of those with EDS. I highly recommend this book if your are just starting to learn about it. Pretty thorough information and easy to read.

[Natalie · Rating 4 out of 5]

Really good quality information about hypermobility syndrome, which any sufferer would be interested to read. It would be useful for medical students to read also. A good account of life with this condition.

[Paula Johnston · Rating 4 out of 5]

Great book for anyone suffering from HMS or EDS, probably a really useful tool for families of sufferers too as it is hard to get across to those close the effects of the illness.

[Tiah]

A good book for people wanting (or needing) to know more about HMS.

[Adri Guadron · Rating 4 out of 5]

I always wondered why I get joint pains and muscle pains, this book cleared many of my questions.