Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

by Claire Smith

Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) are no longer seen as rare, hEDS is now considered the most prevalent type of heritable disorder of connective tissue in the world, thought to affect at least 1 in every 5000 people*, and the prevalence for association of generalised joint hypermobility and widespread pain is higher still*. This shift in understanding demands a different approach to information provision; one that is tailored specifically to those with hEDS and HSD, and which provides a clear, concise and balanced overview - a book that allows you to ‘see the woods from the trees!'

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.'

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!

Genres: Medical, Nonfiction, Disability, Health

188 pages, Spiral-bound

Published June 5, 2017

Reviews

[Claire Griffiths · Rating 5 out of 5]

Saw the reviews on FB and decided to take a chance - was not disappointed, this book is fantastic - would thoroughly recommend.

[Ink · Rating 5 out of 5]

Highly recommend for newly diagnosed patients, or for patients looking for more information about EDS/HSD. The book does have alot of information relating to symptoms, and co-morbid disorders - with references, which can be helpful for tying together medical problems related to EDS.

Because the book is published in the UK, some of the information relates to NHS services or UK based and so some of the information may not directly translate to treatment strategies outside of the UK.
(However I would still recommend this to people not from the UK).

[Solistari · Rating 5 out of 5]

I'm currently trying to navigate the world following an initial diagnosis of Hypermobility Syndrome by a physio about 4 years ago. It's taken years but I finally have a Rheumatology appointment in September. This book is my Bible. There hasn't yet been a question for me that this book couldn't answer.

[Fern Adams · Rating 5 out of 5]

Really helpful, particularly the chapters on management.

[Kass Johns · Rating 5 out of 5]

this has become my health “bible.” The detail that is laid out in extremely easy to understand sections and categories make this book a must own for people with hEDS. I have marked my copy up with yellow hiliter for all symptoms I have experienced and take my book with me on every doctor visit. If you have hEDS, forget the other books. This is a must own reference for you. Ms Smith writes in detailed but understandable terms for lay people to easily absorb— No wild medical speak over anyone’s heads. This book is key to every detail of the hEDS that I suffer. Thank you, Claire Smith!

[Mirjam Meier · Rating 5 out of 5]

The Book is a good insight for newly diagnosed patients.
It helped understanding many past misdiagnosed problems and is great for helping prepare future doctors appointments.
However fully Uk-based and medical English it hasn’t been easy to read. Your English must be good and a translate app comes in handy for the medical terms.

[Chris Weber · Rating 5 out of 5]

Helped me understand the connective tissue disorder I have exists on a continuum and it contains a multitude of symptoms that interplay with every system in my body. To truly learn and I
digest that one statement was so helpful for .y own personal growth.

[jen · Rating 5 out of 5]

my bible 🙏 thank u redcliff house publications

[Charlie - disableddaydreamer | itsbarbieparis (looking for mutuals) · Rating 5 out of 5]

quintessential zebra reading

—reread, again. basically an annual tradition to connect some dots