Books and pamphlets about hypermobile Ehlers-Danlos syndrome and associated disorders 

This website accompanies the book 'Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder', by Claire Smith, published by Redcliff-House Publications. 

Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, by Claire Smith. Edited/reviewed in full by Dr. Alan Hakim. Individual chapters reviewed by Prof. Suranjith Seneviratne, Dr. Lesley Kavi and Dr. Predeep Chopra. 188 page, A4 publication for patients and health care professionals. Used within the NHS, Private Practice and by charities supporting those with hEDS/HSD.
girl looking over the top of a book called Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

Author(s): Claire Smith

Edited/reviewed by: Dr. Alan Hakim, Prof. Suranjith Seneviratne, Dr. Lesley Kavi and Dr. Pradeep chopra
ISBN: 978-1-9997300-0-0
Format: A4. This book has been spiral bound to make it more user friendly for those with hypermobilie hands; spiral binding allows an open book to fold back upon itself, or to remain open on a flat surface or in a book stand.
Language: English
Publishers: Redcliff-House Publications
Publication Date: 2017, Version 1.0
Pages: 188
Product dimensions: A4 i.e. 30 x 21 cm

Book Overview:

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 the newly classified 'hypermobile Ehlers-Danlos syndrome' and 'hypermobility spectrum disorder' (previously known as 'Ehlers-Danlos hypermobility type' and 'joint hypermobility syndrome', respectively).

 

The author has not only managed to compile clear and concise answers to frequently asked questions, such as ‘How do these conditions overlap?’ and ‘Why are people affected so differently?’, she has provided detailed descriptions of symptoms and associated co-morbidities, and has provided comprehensive, accessible, evidence-based information relating to diagnosis and management. Exercise, physiotherapy, surgery and the psychological effects of the disorder are discussed, as well as what to expect during clinical assessment, and much, much more. 

 

From postural orthostatic tachycardia syndrome to mast cell activation syndrome, and from clinical assessment to self-management - if you ever wished that you could find all of the information you need, together, in one place...Look no further!

Reviews for this book:

Wow, this is incredibly helpful. I was diagnosed several years ago and I still didn't know about at least half of this. It explains SO much!’

Patient reviewer 

'I recently purchased a copy of your new book 'Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder' and am delighted with it. The information is life-changing for me, helping me to a diagnosis of a health condition I have suffered from for years.

Patient reviewer

You must publish this book Claire and as soon as possible. I will be recommending your book to my patients - very well done.’ 

Prof. Seneviratne - Director of the Centre for Mast Cell Disorders, and Consultant in Clinical Immunology and Allergy, UCL

‘Best book I have read on EDS (and read lots!!). So glad that MCAD and PoTS are in there too. It was like reading a book about my son.’
Purchaser feedback

‘I commend this terrific book to anyone wishing to learn more about these conditions... This is very much a book for patients, carers, and health and social care colleagues alike.’
Dr. Alan Hakim - Consultant Rheumatologist and Chief Medical Advisor to the Hypermobility Syndromes Association

'I have just received your book. I would like to sincerely compliment you on a job well done. I can imagine the commitment and effort that has gone into writing it. This book was badly needed and is excellently researched and beautifully written. I will certainly recommend your book to all my patients with hEDS and HSD and medical professionals who treat them.' 
Dr Deepak Sharan, Medical Director, RECOUP Neuromusculoskeletal Rehabilitation Centre, India

‘Received my copy and I am in shock at how well written and to the point this book is. It’s like my autobiography of medical issues past and present, and medical care and lack of care.’
Purchaser feedback

'[This book] is unbelievably thorough, detailed, and up to date...’ ‘...[It] is really going to educate and enlighten a lot of people. Now if only we could get medical schools to use it as a text for a course!’

Dr Alan Pocinki FACP. Clinician working with patients with EDS and related conditions

pamphlet called Preoperative assessment guidance for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD). The information on this pamphlet aims to help surgeons and anaesthetists consider the more common concerns that arise in patients with hEDS or HSD.
pamphlet called Dental assessment guidance for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD). The information on this pamphlet aims to help dentists, dental surgeons and orthotontists consider the more common concerns that arise in patients with hEDS or HSD.

Preoperative Assessment Guidance - hEDS & HSD

&

Dental Assessment Guidance - hEDS & HSD

The first in a new range of pamphlets, inspired by requests received from the hypermobile community, are now available.

A percentage of the proceeds from each pamphlet sale is split between the following charities and non-profits: EDS Support UK, HMSA, Ehlers-Danlos Society

Pamphlet specifications:
Author: Claire Smith

Edited/reviewed by Dr Alan Hakim, Joseph Tregaskes MD

ISBN-978-1-9997300-1-7 (preop)

ISBN-978-1-9997300-2-4 (dental)
Format: Pamphlet
Language: English
Publishers: Redcliff-House Publications
Pages: 4 sides (A4)
Product dimensions:  A4 pamphlet 21cm wide x 29.7cm high

Further reading re: Ehlers-Danlos syndrome

Below you will also find a list of books and resources for those affected by hEDS/HSD, written and published/sold by various authors, charities, organisations and companies. Click on individual links for product information and to be taken to the individual sellers website. The list is compiled in alphabetical order. It is by no means exhaustive.

With regard to this page alone, and where products link direct to Amazon,com, EDSH.info is a participant in the Amazon Services LLC Associates Programme, an affiliate advertising programme designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. This helps fund the work involved in maintaining this hEDS/HSD resource website.

 

If you an author or publisher and would be added to, or removed from, this list, please do not hesitate to get in touch via Facebook Messenger by clicking HERE.

Designed for kids and young teens (but a great read at any age)

Bendy Wendy and the (Almost) Invisible Genetic Syndrome

Brad Tinkle, 2017

A story of one tween's diagnosis of Ehlers-Danlos Syndrome / joint hypermobility

Click here

Front cover of childrens book about a zebra with Ehlers-Danlos syndrome. The zebra is standing on his hind feet, cheering, in his bedroom

Ezra the Zebra 

byDr Louise Lightfoot 

Ezra lives with a rare genetic condition called Ehlers-Danlos syndrome and he is fed up with being different, living with constant pain and fatigue.

Click here

book-cover-3.jpg

My Bendy Body

Michelle O'Sullivan

A 26 page colour illustrated children’s book about living with hypermobility.

Click here

Special Like Me...

by Janelle L Shannon LCSW, 2016

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.

Click here

Books and PDFs for adults (some may also be suitable for older teens)

A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome

by Isobel Knight 2013

Click here

Bending without Breaking - Living with Ehlers-Danlos Syndrome Hypermobility Type

by Isobel Knight, (2nd Edition) Revised 2015

Click here

 

Broken: Living With EDS and Other Chronic Conditions

​by Marcia Brock and Cassandra Campbell

An inspirational tale of living with chronic illness

Click here

Being Built Wrong: One Woman's struggle with Ehlers-Danlos Syndrome

by Alexa Simmons, 2014

Click here

Disjointed

edited by Diana Jovin

Click here

‘Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond’ 
by Pearce G. Reinhold E. and Prezaro
Downloadable PDF (which has had more than 10,000 downloads by midwifery and medical professionals) can be found here: 

Click here

Hypermobility and Hypermobility Syndrome -

A letter to my patients by Dr Alan Pocinki MD

Click here

Hypermobility, Fibromyalgia and Chronic Pain, 1e

by Hakim, Keer and Grahame, 2010

Published by Churchill Livingstone

Click here

Hypermobility Syndrome: Diagnosis and Management for Physiotherapists 

by Rosemary J. Keer & Rodney Grahame. 

Published by Butterworth Heinemann

Click here

Hypermobility Without Tears

by Jeannie Di Bon

Published independently

Click here

Joint Hypermobility Handbook 2010 (2nd edition)

by Dr. Brad Tinkle

Click here

Living Life to the Fullest With Ehlers-Danlos Syndrome

A guide for a person living with EDS to achieve a better quality of life

by Kevin Muldowney, PT

Click here

Magnesium and EDS Parts 1 & 2

by Dr Heidi Collins

Click here

Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity

by Afrin, L. MD 2016

Click here

Our Stories of Strength: Living With Ehlers-Danlos Syndrome 

by Reutlinger, Myles, Francomano et al, 

Click here

Pilates Without Tears: The 5-step no pain, no strain strategy to move and feel great

by Jeannie Di Bon, 2016

Click here

Stickman Communications  (suitable for children, teens and adults)

by Hannah Ensor

Books about hypermobility with a light hearted view.

Click here

Understanding hypermobile Ehlers-Danlos syndrome, and hypermobility spectrum disorder - previously known as Ehlers-Danlos syndrome hypermobility type, and joint hypermobility syndrome

by Claire Smith 2017

Click here

Books about disorders associated with EDS/HSD

POTS - Together We Stand

Riding the waves of dysautonomia

by Jodi Epstein Rhum

Click here

Zebra and a book on Ehlers-Danlos syndrome - Waiting for a book to answer your questions on hypermobile Ehlers-Danlos syndrome? It's arrived!

Disclaimer: We assume no responsibility or liability for the content of websites linked on our site. Such links should not be interpreted as endorsement by us of those linked websites. We will not be liable for any loss or damage that may arise from your use of them. No formal listing criteria, and no warranties, guarantees (express or implied) are made as to the quality of care given or any medical advice provided by those in this listing.