Disjointed Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

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 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 alternative pain relief 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.Perscription pain medication 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-med 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-med 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 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).

This book was pretty pricey for a paperback, but it is a large book and is well put together. The author wrote it after watching her own daughter struggle to obtain an EDS diagnosis for I believe about ten years. It’s 687 pages long, including the credits and resources portion. I am only 45 pages in but so far am very pleased. As an RN, I appreciate this book has been written for healthcare workers, patients, and patients families. This would be incredibly valuable for PCPs as EDS is finally becoming regarded as an important diagnosis.There are now 13 types of EDS, and this book covers all of them but is specifically written for hEDS (hypermobile EDS) and Hypermobility Spectrum Disorders.Well done Diana Jovin, thank you for writing an incredibly valuable text on hEDS!!

Fantastic resource for anyone who has been diagnosed with hypermobility. I did not realize so many health issues were connected to hypermobility, and this book, with its vast amount of information and resources, has been very helpful and truly life changing.Thank You!

My ehlers danlos doctor suggested this book and I highly recommend it for everyone. It’s so informative and like the ehlers danlos bible.

I know this book seems expensive but you will be so thankful for the information written by 21 expert physicians, each an expert on the effects of Ehlers-Danlos Syndrome - Hypermobility on a specific body system or topic.The knowledge I learned about the challenges of anesthesia with hEDS may have recently saved my life because I found myself explaining these challenges to the anesthetist!I have loaned this book to two of my healthcare providers and both agreed the book provided info they had not studied before.There is so much outdated or misinformation on the internet. No matter how long you have been struggling with hEDS, I assure you will learn new, accurate info that will improve your understanding and will help you deal with this daily struggle.My sincere thanks goes to the author and to each contributor.

Absolutely love this! High quality product and a wonderfully useful resource

This book is so thorough, it discusses all systems, educates, provides recommendations and resources.It has helped me better advocate for myself and know which specialists I need and what questions to ask, what to expect.I recently had surgery, always have trouble with anesthesia, this explained why and when I discussed the recommendations to both my surgeon and anesthesiologist they thanked me and followed through.I recommend this book to people I meet who have EDS or suspect EDS.Best bank for your buck!

Very expensive book, but so informative. If I could afford it, I would give a copy to each of my doctors.

Vraiment un must

This is the best book in the world on hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD), I encourage anyone wanting to learn more about them to buy this book.I have hEDS and this book has helped me make huge improvements to my quality of life and I used it to help me get my diagnosis.

It provides tips for therapy and treatment options. It lists and describes common related conditions to EDS. It is an important investment. I have just been diagnosed and need to understand. This book helps with this need. It will help my support practitioners to more accurately understand what is needed to help with this condition which is not so well known.

Truly a professionnal written book. Full of knowlegde. It is like reading a textbook story about myself. Truly validating. Nice quality.

Arrived extremely quickly - excellent condition. Thanks