Description: Disjointed is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare’s specialties often working against effective and efficient treatment. With 21 specialist & 6 resource chapters, Disjointed brings together physician, patient, and parent perspectives to support the goal of earlier and more complete intervention.
(there is some additional verbiage on the amazon listing and at hiddenstripes.com) Length: 688 pages, with color illustrations
About the Editor.
Diana Jovin is a technology entrepreneur with a degree in anthropology from Harvard University and an MBA from UC Berkeley. She is also a parent of a child with hEDS, now approaching adulthood. Her experience with securing diagnosis and treatment for her daughter was so frustrating, inefficient, and exhausting, with so many misdirections and wrong turns, she embarked on the project of “Disjointed” in order to change the medical platform available for her child, and for everyone in the hEDS/HSD community, for the better.
The physicians who contributed to Disjointed did so with enthusiasm and care, and shared a similar passion for improving the patient and physician experience.
The book is 38 chapters:
The first 5 are more about setting the context – history of EDS, patient experiences, dealing with specialists, and so forth.
Ch 6 – 31 were each written by physicians or healthcare providers. They cover, in order: genetics (2 chapters), physical therapy, TMJ dysfunction, dsyautonomia, MCAS, neurology, gastrointestinal, autoimmunity, imaging, neurosurgery, anthesiology and preoperative concerns for surgery, pain management (3 chapters), fatigue, sleep, diet, urogynecology, obstetrics, sensory processing, OT, assistive devices, psychiatry (3 chapters).
Then there are six resource chapters that address different things like parenting, education, service dogs, disability and so forth. The book includes some brief patient stories as illustrations of points being made, but it is meant to be a resource book, not a “this was my experience” book.
Contributors: With specialist chapters by: Paldeep Atwal, M.D., Richard Barnum, M.D., Linda Bluestein, M.D., Pradeep Chopra, M.D., Tania Dempsey, M.D., Shanda Dorff, M.D., Matthew Hamilton, M.D., Kristin Herman, M.D., Myles Koby, M.D., Petra Klinge, M.D. & Abby McElroy D.V.M, M.S., Anne Maitland, M.D., Andrew J. Maxwell, M.D., John Mitakides, D.D.S., Alan G. Pocinki, M.D., Lila Rosenthal, M.D., David Saperstein, M.D., Jill Schofield, M.D., Jordan Tishler, M.D., Sarah Seward Ph.D., Jennifer Varga M.P.H., R.D., Emily Block OTR/L, Nancy Block P.T, A.T.Ret., and more…
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