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Ebook: Ehlers-Danlos Syndrome: A Multidisciplinary Approach
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Generalized hypermobility has been known since ancient times, and a clinical description of Ehlers-Danlos syndrome (EDS) is said to have first been recorded by Hippocrates in 400 BC. Hypermobility syndromes occur frequently, but the wide spectrum of possible symptoms, coupled with a relative lack of awareness and recognition, are the reason that they are frequently not recognized, or remain undiagnosed.
This book is an international, multidisciplinary guide to hypermobility syndromes, and EDS in particular. It aims to create better awareness of hypermobility syndromes among health professionals, including medical specialists, and to be a guide to the management of such syndromes for patients and practitioners. It is intended for use in daily clinical practice rather than as a reference book for research or the latest developments, and has been written to be understandable for any healthcare worker or educated patient without compromise to the scientific content. The book is organized as follows: chapters on classifications and genetics are followed by chapters on individual types, organ (system) manifestations and complications, and finally ethics and therapeutic strategies, with an appendix on surgery and the precautions which should attend it. A special effort has been made to take account of the perspective of the patient; two of the editors have EDS.
The book will be of interest to patients with hypermobility syndromes and their families, as well as to all those healthcare practitioners who may encounter such syndromes in the course of their work.
We are a team of Dutch authors and editors, two of whom are Ehlers-Danlos syndrome (EDS) patients. In 2005, along with several co-authors and with financial support from the Dutch EDS support group “VED”, we published a book entitled: “Ehlers-Danlos syndroom. Een multidisciplinaire benadering” (Ehlers-Danlos syndrome. A multidisciplinary approach). The aim of this multidisciplinary, practical book was to create more awareness for and increase the knowledge of hypermobility syndromes, especially EDS and benign joint hypermobility syndrome, among health professionals, including medical specialists, and to be a guide for patients. Hypermobility syndromes often are characterised by extra-articular signs and symptoms that often go unrecognised or are only recognized at a late stage. The ultimate goal was to improve care for patients with hypermobility syndromes, and this proved to be a great success.
Realising that this book indeed filled a gap in the health care system, some years ago the idea arose to publish an international multidisciplinary book on hypermobility syndromes with the help of international authors, with the same aims as those for the Dutch book. This has proven not to be a simple endeavour, but we think we eventually have succeeded. We hope it will meet our aims, described above, and your hopes and expectations. To make this book easily accessible to patients and health care workers, we decided to publish it as a freely available e-book. Financial support was given by many organisations (see the acknowledgements on the next page), for which we are very grateful.
JWG Jacobs, editor-in-chief, Associate Professor in Rheumatology
BCJ Hamel, editor, Professor Emeritus of Clinical Genetics
MC Veenhuizen, editor, Nurse Tutor, hypermobile EDS (hEDS) patient
LJM Cornelissens, editor, Psychotherapist and Medical Ethicist, hEDS patient
