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Disjointed Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
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.
688 pages, Perfect Paperback
Published April 20, 2020
224 people are currently reading
1500 people want to read
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Displaying 1 - 30 of 40 reviews
June 20, 2020
4.5/5
Finally! A book from medical professionals who give a shit about my rare disorder! And what a fantastic book it is. All the odds and ends of EDS are discussed here, from diets to comorbid disorders, even how EDS can affect teeth. This book leaves no subject untouched and will be of benefit to those who have EDS and any doctor or dentist we encounter as we live our lives.
I just wish the book wasn't so heavy. Might be fine for someone with normal joints, but I had trouble reading this because of the weight. Zebras beware!
Finally! A book from medical professionals who give a shit about my rare disorder! And what a fantastic book it is. All the odds and ends of EDS are discussed here, from diets to comorbid disorders, even how EDS can affect teeth. This book leaves no subject untouched and will be of benefit to those who have EDS and any doctor or dentist we encounter as we live our lives.
I just wish the book wasn't so heavy. Might be fine for someone with normal joints, but I had trouble reading this because of the weight. Zebras beware!
June 28, 2020
This is nicely written in a way that anyone can understand. It’s a great resource. Pricey and heavy, but worth it for the practical advice. I think that if you have good medical care with someone who is experienced with EDS then most of it (that applies to your medical care) will be familiar, but for someone just diagnosed or who does not have access to someone with expertise then it is very helpful.
It is the most comprehensive book of its kind and spares the readers having to hunt down medical journal articles just to get advice on their condition. There is at least one book that’s older and attempts to do the same thing, but it’s not comparable at all with the bast amount of material this book covers. Experts have volunteered their time to compile this book.
However, you can tell that there was volunteer effort. It’s written by various experts, but quality is variable. It could have been organized better. Someone might read one thing about very complex condition common to occur with EDS with the perspective of one professional that contradicts with another in a different chapter. That’s a bit of a problem since users if the book are going to be referencing particular chapters for different complaints and have a more piecemeal understanding. They’re not going to recognize more questionable or unsubstantiated advice and deal with problems longer than they might have to if this book had better organization and more effort placed into it.
There was still a lot of care put into it, and it’s a very useful resource!
It is the most comprehensive book of its kind and spares the readers having to hunt down medical journal articles just to get advice on their condition. There is at least one book that’s older and attempts to do the same thing, but it’s not comparable at all with the bast amount of material this book covers. Experts have volunteered their time to compile this book.
However, you can tell that there was volunteer effort. It’s written by various experts, but quality is variable. It could have been organized better. Someone might read one thing about very complex condition common to occur with EDS with the perspective of one professional that contradicts with another in a different chapter. That’s a bit of a problem since users if the book are going to be referencing particular chapters for different complaints and have a more piecemeal understanding. They’re not going to recognize more questionable or unsubstantiated advice and deal with problems longer than they might have to if this book had better organization and more effort placed into it.
There was still a lot of care put into it, and it’s a very useful resource!
January 13, 2022
While not "fun" to read (as if anything is actually fun these days), no book has helped prepare our family for the road ahead better, dealing with out-of-left field symptoms, understanding what's going on, and just feeling like we're not completely alone.
January 25, 2023
This book is my new bible. I hesistated buying it because it is expensive, but I am going to pony up because I really want to own it for reference. There are detailed chapters written by doctors but not in a non-academic way. Topics covered but not limited to: the myriad of comorbodities, psychological components, OBGYN health, child rearing and physical/occupational therapy. I feel both validated and angry to have read that my lifelong laundry list of misdiagnosed or ignored symptoms all have a connection to my connective tissue issue. Anyone with EDS or anyone who wants to support someone with EDS should read/own this book. Every practitioner in any health related field should as well.
June 16, 2021
I'm probably going to need to get my own copy of this, as I didn't have enough time to go through it as thoroughly as I'd have liked. My only complaint is that it really doesn't address neurodivergency (autism/ADHD) in regards to EDS. It discusses misdiagnosis in psychiatry, but I would really love more on the overlap between EDS and neurodivergency. Overall, an accessible but thorough overview of the various comorbidities and presentations of hEDS.
February 2, 2021
Very helpful as I absorb my new diagnosis.
December 30, 2022
Must read for anyone with EDS.
November 12, 2024
A fantastic resource for both medical professionals (including PT students 👋) and people living with hypermobility! So many different topics are covered and I was kind of shocked to see how hypermobility/connective tissue disorders can influence so many parts and systems of the body.
July 17, 2025
Life changing read!!!!!!
March 9, 2025
This book costs a fortune and is worth it! I used my holiday gift money. My doctor recommended it. I recommend it to anyone dealing with Ehlers-Danlos/hypermobility.
February 1, 2023
Currently reading but I felt validated as soon as I began, in the first couple pages alone. Must have for those with EDS/HSD. Hoping to gain the courage to pass this along to dismissive doctors.
January 8, 2022
Extremely thorough overview of Ehlers Danlos... whew! Took me for friggin ever as I made plenty of notes & will be using it as a referral guide.
January 17, 2023
Extremely thorough, useful, and practical guide to understanding and managing hypermobile Ehler's-Danlos Syndrome. I wish I had read this years ago. Well-written and well-edited, with helpful tables and appendices.
August 8, 2022
This book helped me find answers to long time “symptoms” in the form of other diseases: ADHD, anxiety, autoimmune, thyroid issues, etc. This book was fairly easy for a layman to read and I was obsessed with all the information provided! I haven’t been diagnosed with hEDS before but I am now able to compile a list of issues to present to my doctor for this diagnosis and treatment to be easier. It also helped me understand overlapping disorders and I believe I have POTS. I never realized that what I was experiencing wasn’t normal so I’m so grateful for this book!
May 6, 2022
A great resource for anyone who may have a connective tissue disorder, be related to someone with such a disorder, and for medical providers who treat patients with such disorders. While it's particularly geared towards educating about hEDS, it is also educational for any hypermobile/connective tissue disorders.
November 22, 2025
Here are questions I thought might be answered in the book: 1.) a history of the disorders and the people for whom they are named, 2.) a comprehensive list of symptoms, 3.) suggestions for professionals to access, 4.) suggestions for evidence-based options for treatments to address at least some symptoms, and 5.) things to avoid for people with these disorders.
Negatives: I'm not a big fan of the typeface; while it looks nice and formal, it isn't the most accessible typeface to read, which can present a challenge for some people who need to read this text.
Some websites included no longer exist.
I know this is going to sound silly, but the smell is a negative. Whatever ink was used to print my copy smells like dead fish/low tide/bilge, which may make it unpleasant for those with olfactory sensitivity.
Many acronyms and medical terms are left undefined, leaving the reader to try to look them up.
There are many typos and grammatical/spelling errors throughout the entire book. Where these chapters ever proofread?
Information in some chapters conflicts with information in other chapters.
In other places, it it repetitive.
There are asterisks with no explanation.
Chapter 29 needs to be near the beginning of the book.
I found some parts almost insulting in their simplicity.
The book is large and heavy, with sharp corners, which might be problematic for some people with connective tissue disorders.
With regard to my questions: most of my questions were answered, but incompletely. #2 was answered thoroughly.
Positives: There is a TON of information in this book.
The information is relatively well organized.
Most of it is relatively easy to read, although there are sections that are very medically technical. I happen to find this information fascinating and helpful.
There is a lot of information on changes that can be made to a person's daily living.
There are many recommendations for other books to read on the topic.
I appreciate how it discusses how to seek diagnosis and how many cases are diagnosed (what symptoms precipitate diagnosis).
Mix: There is a lot of information on what kind of providers to seek, but little information on how to find those providers in specific locations. What would be helpful would be to include professional organizations that could lead a reader to a local provider.
Overall: I find this to be a valuable resource to guide people who suspect this or similar disorders in their medical journey.
Negatives: I'm not a big fan of the typeface; while it looks nice and formal, it isn't the most accessible typeface to read, which can present a challenge for some people who need to read this text.
Some websites included no longer exist.
I know this is going to sound silly, but the smell is a negative. Whatever ink was used to print my copy smells like dead fish/low tide/bilge, which may make it unpleasant for those with olfactory sensitivity.
Many acronyms and medical terms are left undefined, leaving the reader to try to look them up.
There are many typos and grammatical/spelling errors throughout the entire book. Where these chapters ever proofread?
Information in some chapters conflicts with information in other chapters.
In other places, it it repetitive.
There are asterisks with no explanation.
Chapter 29 needs to be near the beginning of the book.
I found some parts almost insulting in their simplicity.
The book is large and heavy, with sharp corners, which might be problematic for some people with connective tissue disorders.
With regard to my questions: most of my questions were answered, but incompletely. #2 was answered thoroughly.
Positives: There is a TON of information in this book.
The information is relatively well organized.
Most of it is relatively easy to read, although there are sections that are very medically technical. I happen to find this information fascinating and helpful.
There is a lot of information on changes that can be made to a person's daily living.
There are many recommendations for other books to read on the topic.
I appreciate how it discusses how to seek diagnosis and how many cases are diagnosed (what symptoms precipitate diagnosis).
Mix: There is a lot of information on what kind of providers to seek, but little information on how to find those providers in specific locations. What would be helpful would be to include professional organizations that could lead a reader to a local provider.
Overall: I find this to be a valuable resource to guide people who suspect this or similar disorders in their medical journey.
June 24, 2024
This book is an invaluable resource and great text for anyone with hEDS/HSD. It covers a wide variety of topics including physical therapy and pain management and also focus on common comorbidities such as POTS and MCAS.
My biggest qualms with this book is that the way the content was talked about was not very uniform. As each chapter was written by different people I expected that the way of speaking would be different. My frustration lies in that some chapters were very basic, written for a very medically illiterate audience, while other chapters were written very technically, and even with my extensive medical background I struggled to follow them.
The only other issue that I had with the book was the lack of going through the diagnosis process. There was not enough information on how hEDS and HSD typically present and signs and symptoms that are not in the diagnostic criteria. Additionally, the criteria are not adequately explained. While I understand this comes from a view of discouraging self-diagnosis, I believe it is critically important to define the diseases that are talked about in this book. Many physicians refuse to diagnose hEDS and HSD not because they don't believe they are real, but lack information on how it is diagnosed and how it typically presents. It is not enough to say to go to an EDS aware provider, but I wish this book set out to educate providers on EDS and at least give a in depth overview of diagnosis and differential diagnosis.
My biggest qualms with this book is that the way the content was talked about was not very uniform. As each chapter was written by different people I expected that the way of speaking would be different. My frustration lies in that some chapters were very basic, written for a very medically illiterate audience, while other chapters were written very technically, and even with my extensive medical background I struggled to follow them.
The only other issue that I had with the book was the lack of going through the diagnosis process. There was not enough information on how hEDS and HSD typically present and signs and symptoms that are not in the diagnostic criteria. Additionally, the criteria are not adequately explained. While I understand this comes from a view of discouraging self-diagnosis, I believe it is critically important to define the diseases that are talked about in this book. Many physicians refuse to diagnose hEDS and HSD not because they don't believe they are real, but lack information on how it is diagnosed and how it typically presents. It is not enough to say to go to an EDS aware provider, but I wish this book set out to educate providers on EDS and at least give a in depth overview of diagnosis and differential diagnosis.
May 11, 2025
Wow. Just wow. This has been on my TBR list for years now, but a high price and lack of library/secondhand copies has kept it out of my hands.
There are books you want to read, books you ought to read... and books that should literally be a medical prescription. This is one of the latter. My hEDS diagnosis occurred 39 years ago, and i have spent the past 12 years combing the internet for information, theories, and solutions. I now have a heavily-tabbed, hyper highlighted copy, that is currently the second-best reference i have ever seen.
If you have hEDS, yes... it's worth the price tag. (Waiting for a secondhand copy took me 3 years, to save $15) I only wish I'd picked it up years ago.
There are books you want to read, books you ought to read... and books that should literally be a medical prescription. This is one of the latter. My hEDS diagnosis occurred 39 years ago, and i have spent the past 12 years combing the internet for information, theories, and solutions. I now have a heavily-tabbed, hyper highlighted copy, that is currently the second-best reference i have ever seen.
If you have hEDS, yes... it's worth the price tag. (Waiting for a secondhand copy took me 3 years, to save $15) I only wish I'd picked it up years ago.
August 29, 2025
This is a big expensive heavy book on Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders! I started reading it on July 20 and finished on August 28, 2025. I have tabbed all the places that I want to re-visit and there are so many. Some chapters meant more to me than others, that is because Ehlers-Danlos is not the same for everyone.
The ones on Balance, Fatigue and Pain are essential for me. I love that this book is packed with suggestions, website addresses. and a few book recommendations. In two situations, I found that I may have been misdiagnosed in the past for some of my problems and now I know that I need to learn more about Mast Cell Activation.
This is a treasure trove of information so it was worth buying it.
The ones on Balance, Fatigue and Pain are essential for me. I love that this book is packed with suggestions, website addresses. and a few book recommendations. In two situations, I found that I may have been misdiagnosed in the past for some of my problems and now I know that I need to learn more about Mast Cell Activation.
This is a treasure trove of information so it was worth buying it.
November 25, 2023
Extremely insightful and written for anyone to understand, unlike most medical textbooks, this one is catered towards the patient. Although I do not have EDS myself, it helped me further understand and help someone close to me who does. They also found the book educational and helpful to further understanding their disorder.
June 30, 2023
Well written reference book for patients with HSD/hEDS and the physicians who treat them. Explains everything from symptoms, to pain management, to diets, and everything in between. Written by 21 specialists. Definitely recommend this book.
March 7, 2024
I read this more as a text book to glean the information I needed to understand my medical condition.
It has some phenomenal information and good resources to check out afterwards.
Highly recommend for anyone suffering EDS.
It has some phenomenal information and good resources to check out afterwards.
Highly recommend for anyone suffering EDS.
May 9, 2024
If you are in the unfortunate position to need a book on this topic, it's a good one. Lots of good information, though I wish the chapters were a little more balanced in terms of tone. Some were so dense with medical information and others were too sparse.
January 5, 2025
so resourceful! very clearly explains all of the ways that hEDS is tangled up with other disorders and syndromes in an in depth but accessible way. i will definitely keep this so i can pick it up if i have a wondering about a symptom! i feel equipped to ask specialists about what is going on.
August 25, 2025
This book is a must-read for anyone with hEDS, or if you or a family member suspect hEDS. Thorough and factual and using many reputable doctors as well as patient viewpoints. It will help you advocate for yourself and give you some explanations you didn't know that you needed.
August 27, 2025
Very helpful, but just not enough room in my brain at this point to digest it. It'll be a great book to run to for information as I deal with my EDS and MCAS and to start taking small steps toward managing the struggles in this season of my life.
March 19, 2022
Incredible research easy to read
December 10, 2023
I'm so glad this book exists! Thank you, thank you, thank you!
January 6, 2025
Yeah this adds up
February 11, 2025
this book changed my life.
Displaying 1 - 30 of 40 reviews