“Disjointed” is a new book for patients with hEDS/HSD and their physicians
“DISJOINTED” – Edited by Diana Jovin
Disjointed is now live on Amazon and shipping.
Click here for a link to order online,
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…
More EDS Educational Programs below
Learn more through these Free educational video programs about
Ehlers-Danlos Syndromes presented by over 60 experts covering
50 EDS related topics.
Ehlers Danlos Syndromes is a genetic condition that is NOT “Rare” but “Rarely Diagnosed”
Patients & healthcare providers can attend all free programs
100+ EDS Educational Webinars listing with patient Q & A
Select by presenter’s name, topic, specialty and location.
https://www.chronicpainpartners.com/webinars/
EDS Healthcare Providers Educational Program relaunched in 2021
https://ehlers-danlos-cme.org/
Newly launched in 2019 EDS Nursing Educational Program.
https://ehlers-danlos-nursing-edu.org/
EDS Support Group Educational Program with Mandy Harvey
http://leadeds.com
120 world wide EDS support Groups listing
https://www.chronicpainpartners.com/
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Hi there
I am terribly disappointed ….when I tried to purchase the book, Amazon declined the sale saying that it could not be mailed to New Zealand! I was so excited to read about it as I am lying in pain with a dislocated hip, which in NZ is neither Covid19 or life threatening, meaning I must wait until NZ goes down to level 2! Please reply with good news for me! Thanks, Nan
Hello, I am in New Zealand, and I would like to buy a few copies of the book Disjointed, however it is not available here and Amazon does not allow this one to be shipped to NZ. My husband is a medical doctor who specialises in EDS, and we think it would be a great resource for us to have here. He was going to be in America three times this year at EDS events and conferences, however with COVID these have been cancelled so he is not able to buy copies while he is over there as he won’t be there after all. Do you know of any method that is available to us to buy this book and have it sent to New Zealand? Thank you for your help. Kind regards, Kylie
Thanks for all the information. We have 4 generations of eds. You are so helpful. Hugs.
Thank you for this most comprehensive book on EDS.
My granddaughter has been diagnosed with hEDS over a year ago after about two years of trying to figure out, visiting an enormous number of specialists including a psychiatrist, what was happening to her body. She had been diagnosed with Celiac when she was seven years old. She will turn 19 this year!
My question is to Jennifer Varga, Food & Nutrition: Are there currently any studies regarding adding bone broth to her diet? (I just watched on PBS the Collsagen Diet with Dr. Josh Axe)
Thank you
If you wish to ask Dr. Varga a question, we recommend contacting her directly. Thank you.