Understanding hEDS, and HSD.
Our understanding of the complexities of hypermobile Ehlers-Danlos syndrome, and hypermobility spectrum disorder (previously known as Ehlers-Danlos syndrome hypermobile type, and joint hypermobility syndrome) has advanced significantly over the last 10 years, of that there is no doubt. Yet there is a lack of good quality publications covering the new information we have. Frequently, patients are expected to navigate a complex medical system and then manage more and more of their often complex care at home, so it is with great pleasure that I have read this book, which provides answers to the most frequently asked questions; describes signs, symptoms and co-morbidities, what to expect from clinical diagnosis, and management. If you are newly diagnosed; then this book tells you what you most need to know about the conditions. Professionals in health and social care will also benefit from reading this book; so as to gain a broader understanding of the complex issues surrounding what are multi-systemic conditions, and the impact on their patients on a day to day basis.
This book can be read cover to cover if the reader chooses. Alternatively, it could be effectively used as an encyclopaedic tool and relevant sections read when needed. Each bodily system is covered but, importantly, the book also focuses on how to live well with these conditions. Resources for readers have been added where possible, to allow further reading. I am pleased to note the section on anxiety based disorders, something which is often overlooked and yet must be managed successfully if a person is to progress to positive self-management.
One of the remarkable features of this book is the author’s ability to provide insight and observations that help bridge the gap between the viewpoint of clinicians and that of their patients, helping them achieve effective communication and understanding. Communication barriers often go undetected in health care settings and can have serious effects on the health and safety of patients. For example, when a doctor says “I’d like to refer you for psychological help”, to the patient this may mean ‘he/she thinks it’s all in my head’, whereas, to the doctor it means they understand that things are difficult and feel that psychological therapy could be one of several useful tools in helping a person with a long term health condition cope.
I would like to congratulate Claire – this book has been a 5 year project for her; it is extremely well written and great care has been taken to explain medical terms. Few people, regardless of experience, will read this book without having learned something. I recommend it without reservation to all of the hEDS/HSD community and those who support them.
CEO & Chief Medical Officer
Hypermobility Syndromes Association