Thursday, 25 February 2016

A GUIDE TO LIVING WITH EHLERS DANLOS SYNDROME HYPERMOBILITY TYPE - BENDING WITHOUT BREAKING BY ISOBEL KNIGHT WITH FOREWORD BY DR ALAN HAKIM

Title: A Guide To Living With Ehlers Danlos Syndrome Hypermobility Type
By line: Bending Without Breaking 
Author: Isobel Knight
Foreword by: Dr Alan J. Hakim

BLURB from Goodreads
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. New material includes:

changes in terminology
information on how osteopathy and nutrition can help
psychological approaches beyond CBT
how to deal with professionals 
what to expect from support groups and rehabilitation programmes

This new edition will be 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.


PURCHASE LINKS


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.

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