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Book Review: ‘Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Diso

Although the syndromes we now know as Ehlers-Danlos (EDS) were first described as far back as 1892, the number of available materials for patients and medical professionals is surprisingly few. Considering Hypermobile EDS (hEDS) and the closely-related Hypermobility Spectrum Disorders (HSD) probably comprise at least 1% of the general population, the dearth of resources is even more alarming. In addition, recent changes in nosology mean that our understanding of these syndromes is still fluctuating significantly– with the likelihood that definitions will continue to experience “growing pains” in years to come.

Claire Smith is the Publication Editor and Partnership Director at the Hypermobility Syndromes Association in the UK, as well as mother to a daughter with EDS and who herself has an HSD. She has written this phenomenal book, Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, which covers symptomology, diagnosis, and management extensively. It’s written in a reference manual format but in a friendly and easily accessible style. And even better, it’s written by a woman who has longtime firsthand experience with the challenges of hypermobility, the pain it often causes, and most of EDS’/HSD’s comorbid issues, like dysautonomia, mast cell activation syndrome (MCAS), and fibromyalgia. In short, it’s written by a zebra for zebras and for anyone who treats or cares for someone with the condition. It’s a book that patients and doctors alike should have on their bookshelves.

I have traditionally been an autism researcher. In full disclosure, I myself have somewhat recently been diagnosed with an HSD and for the past several years have been struggling with the pain and many of the comorbid complaints that come with this complicated condition. As I’ve continued to learn more from the phenomenal patient community available through resources like FaceBook, I’ve quickly learned that there are indeed links between EDS/HSD and autism, which have been understudied and which I am currently pursuing professionally.

Therefore, I also recommend this book to the autism community, particularly to females who are themselves on the spectrum or have a relative who is. You may find some of the associated challenges described in this book eerily familiar, such as a hypersensitive immune system or features of dysautonomia like gastrointestinal disorders, fatigue, and headaches. Likewise, you may find the suggestions for management of those symptoms equally enlightening.

This book is a thorough and excellent resource. For any novice zebra who’s wanting to learn more about her/his condition, how to go about seeking diagnosis, and how to manage her/his treatment regime, this book is a must have. And for zebras who are already old hat at this connective tissue disorder thing, it’s a great reference that may still teach you quite a few things you didn’t already know. And this is certainly a necessity for any physician who has any patients with EDS/HSD– regardless of whether s/he’s a general practitioner or specialist!

#autoimmune #hypmobilityspectrumdisorders #EhlersDanlosSyndrome #fibromyalgia #posturalorthostatictachycardia #dysautonomia #POTS #mastcellactivationsyndrome #autism #EhlersDanlos #autismspectrumdisorders #MCAS

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