Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale
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Disjointed (688 pages) 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. 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., 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. and more... For more information, see table of content images.

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4.9 out of 54.9 out of 5
304 global ratings

Top reviews from the United States

Salud
5.0 out of 5 stars
Judge a book by its price- do you? Great Info from EDS experts for a single co-payment
Reviewed in the United States on May 5, 2020
For the price of an office visit to one specialist, finally a map to navigate thus uneven, fee for service, often unforgiving terrain of a health care system. I am one of the practitioners, who tries to partner and care for patients, who have been marginalized and... See more
For the price of an office visit to one specialist, finally a map to navigate thus uneven, fee for service, often unforgiving terrain of a health care system. I am one of the practitioners, who tries to partner and care for patients, who have been marginalized and gaslighted by the medical community for years. Ms. Jovin asked, poked and gently reminded all of us to volunteer our time for this book, to keep the cost to a single co-payment. I take my hat off to the editor, for this tour de force effort. Now hopefully patients can be empowered, with valuable insights, to build a medical home, nearby or remotely. Every one of these authors have delivered lectures or published in their area of expertise, regarding ht EDS and hypermobile spectrum disorder, and freely contributed. I look forward to reading the efforts of the other authors. Until the e-book comes along or a company sponsors this book, Yes, the printing costs some duckets, beyond all that Ms. Jovin invested out of her own pocket. However, this book is worth it.
111 people found this helpful
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Amber Walker
4.0 out of 5 starsVerified Purchase
Valuable but cost-prohibitive
Reviewed in the United States on May 29, 2020
All in all, I found this book to be a good resource for both patients and providers. I especially liked the chapter on dysautonomia by Dr. Andrew Maxwell. However, for the length of the book and the fact that it''s a paperback, I felt that the price was outrageous and that... See more
All in all, I found this book to be a good resource for both patients and providers. I especially liked the chapter on dysautonomia by Dr. Andrew Maxwell. However, for the length of the book and the fact that it''s a paperback, I felt that the price was outrageous and that this will prevent the book from getting into the hands of many patients in need. I work with a lot of patients who have hEDS and so far based on my conversations with them, while they are aware that this book came out, no one has been able to purchase the book due to the cost.

I imagine that the reason the cost is so high has to do with the color images, as the book does have some nice visuals. However, I''ve personally published a book at a similar length with a slightly larger size in black and white and was able to offer it at half of the price of this book, so I know that it''s possible.

I also felt that there was tons of overlap describing certain conditions like Chiari malformation and CCI spread out throughout various chapters and I would have liked to have it organized according to these topics for easier reference in one place (or at least to have an index at the back to quickly reference certain topics), but I also understand the value in having chapters written by different providers. I also would have liked to read more about holistic healing options since the book mainly focused on the mainstream approach.

pros: very comprehensive, includes information from many well-known specialists, nice visuals and charts, unexpected bonuses were chapters on things like urogynecology, obstetrics, and medical cannabis

cons: cost, odor (off-gassing gave me migraines), lots of overlap of certain topics and no index to look up/quickly locate info., lack of integration of more natural/functional medicine concepts

All in all, glad to have this as a reference for my chronic illness library. Thank you Diana Jovin for putting this together!
63 people found this helpful
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Lisa
5.0 out of 5 starsVerified Purchase
Easy to read and understand. Great resource for a very complicated disease.
Reviewed in the United States on May 13, 2020
I received this in the mail yesterday and have not been able to put it down. I was so excited when I saw that someone had taken the time to put together such an in depth book for a disease that we know so little about. I have been a nurse for over 25 years and until one of... See more
I received this in the mail yesterday and have not been able to put it down. I was so excited when I saw that someone had taken the time to put together such an in depth book for a disease that we know so little about. I have been a nurse for over 25 years and until one of my daughters doctors mentioned H EDS at an appointment I had never heard of it. We had been going from one specialist to the next trying to tie together things that no one could tie together. Put aside the 4 years of therapy she had been going to for Anxiety and Depression. This book ties together so much that has been left unanswered until recently. I highly recommend this to anyone who has a child with H EDS or if you are an adult with H EDS. The Doctors and therapists that were a part of the making really took the time to not only give understanding to the disease process, but they have real practical ideas for people who are suffering from such a wide range of issues. Thank you Diana for the time and care you put into bringing this book to us all. It is easy to understand and you added so many reassurances to people that, no they are not alone and it is not all in their head. This book came to us at a critical time and I am a very grateful mother.
30 people found this helpful
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Susan H Ferguson
5.0 out of 5 starsVerified Purchase
Best book on EDS I’ve read so far!
Reviewed in the United States on May 20, 2020
I was diagnosed with EDS last year and have been struggling to find information. There are a few other books out there but they don’t get into to much detail regarding the medicine and separate specialties. This book has this information and so much more. I read it all in... See more
I was diagnosed with EDS last year and have been struggling to find information. There are a few other books out there but they don’t get into to much detail regarding the medicine and separate specialties. This book has this information and so much more. I read it all in one sitting. It is so validating to see my symptoms/diagnoses in this book. I’ve also found names for symptoms I’ve been experiencing for years and explanations for why my body is the way it is. Because of this book, I know what questions to ask my doctor and how to go about getting the treatment I need. If you or someone you know has EDS or HSD I highly recommend getting this book.
33 people found this helpful
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Miagracie
5.0 out of 5 starsVerified Purchase
Expensive, but well worth it!
Reviewed in the United States on June 1, 2020
I have many EDS & co issue books, and while they are all very good this is probably my favorite one. It is expensive, but worth it. Remember that this is a book for a smaller audience vs a mass market book for everyone, and printing a book this size and quality is... See more
I have many EDS & co issue books, and while they are all very good this is probably my favorite one. It is expensive, but worth it. Remember that this is a book for a smaller audience vs a mass market book for everyone, and printing a book this size and quality is expensive, and the writer is not likely making a lot of money off of it, even if it feels overpriced (I''d have liked to have seen it for about $30 or under). I hope a kindle version that is cheaper also later comes out. I''d have also liked an index of keywords to find pages in the back, but understand that''s a large undertaking.

The content is excellent and the authors of each chapter are well respected experts in their field. This is not a book by a patient or author. The author organized chapters written by these experts. A wide variety of issues of EDS & co-issues are covered well. A lot of info is packed in it, and it explains things very well. If you were trying to explain an issue to someone in a through but also concise way, opening a page of this book to your issue would do very well. It''s so well organized by chapter and sections in the chapter, info is easy to find.

Even if you''re well versed on EDS and have done a lot of reading of medical journals and other books, this is still a very good resource. You will learn something or find a thought in it that is helpful (likely very many things). It seems to cover most if not all the common (and uncommon) co-issues as well very thoroughly.

It is also very respectful in tone to the patient. If you are struggling with a doctor or someone in your life who doesn''t understand EDS, showing them something from this book should help. One very important thing are the chapters on psychiatric misdiagnosis (conversion disorder, malingering, etc) that many EDS patients have been labeled with. There are chapters that deal with this and many times throughout the book, they make it clear that our issues are not psychological but physical and very real.

But there is a chapter respectfully acknowledging that sometimes someone with this illness (or any serious, chronic one) needs help coping (or needs help for other reasons), but it makes it clear (it''s clear this book is written for both patients, and their doctors and the patient''s family members), and that if one has anxiety, depression, etc...it''s because of what you are going through physically (or other personal reasons, situations, and issues perhaps unrelated to EDS) and makes it clear beyond a doubt that EDS and it''s co-morbid issues are physical issues, not psychiatric ones and are not to be treated or labeled as such. And that medical professionals should not be confused and think that psychological issues are causing the physical issues, even if someone needs or seeks mental health care for whatever reason. The book has a strong, firm voice on this that may help when/if someone is put in a situation where this is happening.

The book has some controversial issues and content. The use of cannabis has it''s own chapter, and some of it may surprise those of us less familiar with that for pain control, you may find what you thought you knew about it you didn''t, especially for those of us who knew little about it.

Opiod use is discussed in several chapters. The tone seems balanced, but perhaps a bit on the politically correct side of avoiding or limiting them. Not forbidding them or condemning those who need them. The authors do understand our pain is real, and some need these meds. But it does embrace a bit the anti-opiod sentiments popular right now. Not in full, but in restricting them as docs are now told to do. So some might be a little put off by this, but it''s certainly not an anti-opiod book over all.

Some of the issues that it covers very, very well: mast cell activation syndrome, POTS-dysautonomia, cervical instabilty, chiari, tethered spinal cord, gastro issues, reproductive system issues, joint instability and pain.

It doesn''t just explain all these issues and many, many more. It does thoroughly and concisely at the same time in an easy to understand way (great for explaining to others too), but with a lot of detail packed in and a lot of practical suggestions and advice, some of it very specific. It''s not just explaining what you are going through, but offering a lot of good advice you can use to cope.

Again, it is an expensive book. And some may wait until (if it ever does) it comes to kindle or a sale due to the price. But you do get your money''s worth with it even at full price. It really is that good. I doubt anyone will be disappointed in it. I highly recommend it if you can manage it financially (not everyone can).
26 people found this helpful
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Snax
5.0 out of 5 starsVerified Purchase
If you have EDS, absolutely buy this book.
Reviewed in the United States on May 17, 2020
If you, or someone you know, has EDS, buy this book. The editor has brought many of the most experienced and knowledgeable doctors together to write this thorough and exhaustive book. Amazing content. The illustrations are precise and clear, the design is excellent, and the... See more
If you, or someone you know, has EDS, buy this book. The editor has brought many of the most experienced and knowledgeable doctors together to write this thorough and exhaustive book. Amazing content. The illustrations are precise and clear, the design is excellent, and the footnotes are excellent. I have no idea how something this good and complete can be so inexpensive, it must have been a work of love. Thank you!
15 people found this helpful
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Samantha
5.0 out of 5 starsVerified Purchase
Should be required reading for patients and providers!
Reviewed in the United States on January 16, 2021
This book is amazingly well written, organized, and full of so much validating information backed by doctors and experts and personal experiences. I waited over 10 years for diagnosis and am feeling much more confident about addressing some of my comorbid conditions that... See more
This book is amazingly well written, organized, and full of so much validating information backed by doctors and experts and personal experiences. I waited over 10 years for diagnosis and am feeling much more confident about addressing some of my comorbid conditions that have as yet been untreated/diagnosed like dysautonomia. This is a must read for hEDs patients and probably healthcare providers too.

The only caveat is that one needs to have some knowledge of medical jargon to not get bogged down in some spots. I personally didn’t find this an issue but I have a background with medical terminology. It’s clarified pretty well so don’t let that stop you. It’s worth every minute spent reading/studying it.
11 people found this helpful
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Kindle Customer
5.0 out of 5 starsVerified Purchase
Great information for coping with hEDS, Dysautonomia, and more!
Reviewed in the United States on May 15, 2020
Excellent educational resource for patients, chock-full of great information, most of it cutting-edge, up to date advances in diagnosing and coping with these conditions.
11 people found this helpful
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Top reviews from other countries

monique curci
5.0 out of 5 starsVerified Purchase
Don’t let the price scare you, its blueprint/roadmap for us Zebras
Reviewed in Canada on June 14, 2021
Sorry this is a bit long, Words cannot even begin to express how grateful I am for someone taking the time to put this book together. It’s a beautifully done road map/bible 🤗 I had a hard time justifying spending the money for so long but after so many years fighting and...See more
Sorry this is a bit long, Words cannot even begin to express how grateful I am for someone taking the time to put this book together. It’s a beautifully done road map/bible 🤗 I had a hard time justifying spending the money for so long but after so many years fighting and researching for me and my kids I just couldn’t do it and I finally bought the book. Soon as I got it I couldn’t put it down read it that same day. Don’t let the price scare you, if your still searching for answers or looking for more help/info omg please please don’t hesitate buy it. I bought and read so many other things even off the EDs website but nothing even compares to what is in one book🥲 It is literally a blue print and road map. It covers Signs, symptoms, different types of EDs and other co-occurring conditions, diagnostic processes, diet, mobility devices and other devices or tools or bracing suggestions, and so much more I remember a while ago a woman in a few of my FB zebra /EDs group asking questions and talking about writing a book, didn’t realize this would be the result of her hard work and dedication. It’s based on the/our hard journey to get answers along with specialists information for both us and our doctors I highlighted and booked marked everything that was helpful for my family and brought the book to our next medical appointments and fiiiiiinally we were heard and diagnosed. We were referred to genetics immediately and to the other specialists needed. Plus I got to throw it (in a nice way of course in the other specialists faces after years of them denying and saying it was my mental health Finally Validation 🤗🤗🤗🤗
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Melissa
5.0 out of 5 starsVerified Purchase
Best resource on EDS out there
Reviewed in Canada on September 15, 2021
This book is full to the brim with information about EDS and conditions that go alongside it. Lots of great tips on how to manage it all. This book will be invaluable if you live in an area where doctors and care teams no little to nothing about EDS…so practically anywhere....See more
This book is full to the brim with information about EDS and conditions that go alongside it. Lots of great tips on how to manage it all. This book will be invaluable if you live in an area where doctors and care teams no little to nothing about EDS…so practically anywhere. Worth the money.
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Kathy Van Zeyl
5.0 out of 5 starsVerified Purchase
Comprehensive
Reviewed in Canada on September 13, 2021
A comprehensive, up to date and well-researched guide to EDS by leading experts in the field. Extremely useful for practitioners treating a population of patients with scarce access to other supports.
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Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale

Disjointed | Navigating high quality the Diagnosis and Management of hypermobile Ehlers-Danlos wholesale Syndrome and Hypermobility Spectrum Disorders online sale