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).
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Customer Review: Unique learning opportunity!
Linda Bluestein, MD
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It is very validating
I've just started this book. And already, I am validated and this almost brings me to tears. My symptoms are ALL explained in one chart. EVERY ONE OF THEM! I'll be showing this to my doctors. Navigating the medical specialties is hard enough, and then one needs to find a specialist that believes the patient, is familiar with the diagnosis, and has the ability and interest in helping the patient. The task seems so daunting. So far, I think this book will be most helpful in this endeavor. Thank you to the author, for your efforts to help this underserved community.
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Top reviews from other countries
monique curci
Don’t let the price scare you, its blueprint/roadmap for us Zebras
Reviewed in Canada on June 14, 2021
Ol
Covers the important issues with EDS and hypermobility
Reviewed in Australia on April 13, 2023