Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome

by Brad T. Tinkle

As a followup to his previous best-selling book, "Issues and Management of Joint A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome," Dr. Tinkle has created this handbook with several contributors to expand insights into the understanding and management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome. Dr. Tinkle has received many accolades for his ability to take a complex condition and make it understandable in everyday "...provides a wealth of information about the natural history, and physical and medical management... It should be of great value to patients." - The American Journal of Medical Genetics Reader comments... "...a useful tool in helping me obtain the type of care I need to manage my disorder..." "This book is simple but not oversimplified. It is an excellent basic resource, giving a clear, concise, and useful overview for those (like myself) who live with hypermobility." "Super book for EDS! Finally a book that everyone can understand." "...thoroughly explores the problems associated with EDS-HM. It is a relief to realize that it is not just me..." "...a tremendous service for the health care community and the families and friends of those diagnosed or not yet formally diagnosed folks with EDS-HM... joy and clarity in reading the very 'easy to read' text chapters detailing out the impact of EDS-HM..." In addition to the weatlth of positive reviews, Dr. Tinkle's previous book on the same subject was a best seller in several - Genetics - Medical Genetics - Orthopedics - Family and General Practice Brad T. Tinkle, M.D., Ph.D., is a clinical and clinical molecular geneticist at Cincinnati Children's Hospital Medical Center (CCHMC). He specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia among the many.

Genres: Nonfiction, Health, Medical, Medicine, Self Help

260 pages, Paperback

First published August 11, 2008

Reviews

[Noelle · Rating 5 out of 5]

I agree with other readers that there are grammatical errors and some layout problems, but that's a minor annoyance I can forgive. This is the best book I've found with a comprehensive (but not overwhelming) view of what joint hypermobility syndrome entails.

It's written by an MD with extensive experience with JHS and Ehler Danlos patients, and information sources are reputable and clearly cited. It's been useful in continuing my understanding of my diagnosis as well as bringing to doc appointments to consult. This book was recommended to me by my neurologist, who recognized JHS. Most of the doctors I see haven't treated patients with joint hypermobility syndrome, but are more open to suggestions from a book written by a MD, rather than Dr. Internet. ;-)

[Althea May · Rating 4 out of 5]

I gave it four stars because this topic is incredibly important and the information was laid out very clearly and in very accessible language. I want so badly to give this book five stars because it's incredibly helpful as I'm learning about my new diagnosis.

But I think it's overdue for an update- a lot of science happens in six years! It also has many grammatical/layout errors and could be reformatted to make it more simple. The URLs at the ends of some chapters could also use editing/updating.

But if you just got diagnosed or need some guidance on EDS, I strongly recommend having this book in your collection.

[Kat Harnisch · Rating 4 out of 5]

Very informative! It’s nice to have all of this information together in one place, particularly if you have doctors that aren’t getting you the care you need (or aren’t giving you the information quickly enough). Definitely recommend for anyone with JHS or for anyone who knows someone with JHS.

[Scarlett Futch · Rating 4 out of 5]

Although this book on Ehlers Danlos syndrome is a few years old, it is still on par with extremely relevant and important knowledge on learning to living with this complex disorder. The author, Brad Tinkle, is known as one of the world's leading experts on EDS, and after reading this book, you understand why he has gained that status.
This handbook is unlike many other medical handbooks, where information tends to be a labyrinth of medical jargon. It is laid out in an easy to use format, with the ability to find specific information when needed. The tips recommended are vast in suggestion, and never lead you to think a certain way is "right or wrong". The Joint Hypermobility Handbook is a must have for any person who not only has EDS, but any connective tissue disease; or for anyone who would like to learn more about Ehlers Danlos Syndrome- an all too commonly ignored and misdiagnosed syndrome.

[Rhea · Rating 4 out of 5]

This book is definitively useful, in that many people describe that you can "already find this info elsewhere*" but you can't just print out pages from a forum and bring them to your average doctor and have them take that seriously. This book contains good citations and has been written by a doctor. Are there maybe other EDS books around that cover this? Certainly, this is my first and I read it to support someone I know with the condition. *Amazon reviews

I read the book on the ibooks store through apple. I highly recommend this as I have heard many people say the paperback that is currently in distribution is not well bound and this makes it difficult to read, especially for people with hand joint problems (and most with EDS) do. The book on ibooks is remarkably easy to read, even by ebook standards. I really like how easy the TOC is to use too. It is also cheaper on ibooks than in paperback, even used. If you can do a computer or tablet based book: do it.

The writing itself is coupled with some pictures and almost all of them demonstrate without captions what they are supposed to be showing, but explain with text as well. A few are a little unclear. The writing is pretty simple to read and does well at avoiding a lot of complicated medical terms that you can't understand and it explains different concepts well. Some of the chapters feel short, and I wish there was more as much as I am glad there isn't (you can't get doctors to read that much usually at request).

Medicine moves quickly, the internet is not very tangible and is a medium of impermanence. A few of the links I clicked on were either broken (one in the spine section), one of the websites had odd content as if hacked/scrambled/poorly archived (one in the eyes section). The book was published from what I understand in 2010 and it's now 2017. It is to be expected some links do not still work.

EDS finally had it's new criteria released this year after the convening of the group monitoring the conditions, so that is necessary to account for as well. I am hopeful for all the EDSers around that more funding and research will be headed your way due to this reconvening and it's switch to reassess things more often than previously.

For as much is similar among EDSers I think as much can be different as well. There is some innate heterogeneity. I do think that the solutions offered are not always all that useful, and I know therapy/CBT/anti-depressants were popular all around then and now... once they fail very rarely are there any resources for you as a pain patient. I worry that the book relies too much on stating the first, but not when they fail to work: which from my experience they often do. While hypersensitive nerves seem to be common in those with EDS and POTS... that doesn't mean that therapy can help anymore than an analogous support and a side note among treatment.

[This is a personal note though as someone who has existed in the chronic pain support 'community' for a while now, and applies in general to any pain condition and not just EDS. I do not see why EDS alone would have different results than those described in other chronic pain conditions, where therapy is helpful to some and not to many others as it doesn't actually treat, mitigate, or calm your actual pain, it can help your grief, mood, etc.]...
You can't psychology your way out of pain and you are't weak if you aren't able to do so. Researchers, doctors, and studies are humans/human made things and have errors. Things that work in research don't always translate to the field or in 'real life,' and the field of pain research has further to go than people think it does, the issue is no where near solved, sadly.

Note: I don't have a better word but forgive me- the book is a bit 'dated' in the context of it's mention of CFS (chronic fatigue syndrome)/conflated with 'chronic fatigue.' (I have ME/CFS and I can tell you the book very much oversimplifies the condition and doesn't seem to respect it for what research has now shown us about it.) It shortens the definition to only one symptom- persistant fatigue. That is not what CFS is, it is more specific than that, even if the trivial name of the condition suggests otherwise. It is a syndrome (collection of symptoms) and is more than just 'a little tired,' it involves a fairly unique post exertional relapse/neuroimmune reaction mechanism that isn't well understood to date, but has been documented.

I want to be clear: It is not that I was expecting this handbook to focus specifically on CFS, I just want the information when it is offered to be correct, instead of some people with EDS believing they have CFS if they don't and applying what would be incorrect treatments anyway or people who have CFS and EDS to think there may be more help in this book for that particular part of their case than it does offer.

If you have ME/CFS in genuine, whether you have EDS or not: this book only has a few pages on CFS as a condition and the info is PACE-era, and at best not useful on this particular comorbidity alone.

That shouldn't be enough to stop you from reading the book if you have EDS and hypermobility: it is a very good resource for them, just as it set out to be.

If you are looking for info on EDS, the hypermobility spectrum and its intersection in patient populations with ME/CFS you can find this readily acknowledged on the recently released pediatric and youth ME/CFS primer headed by Dr. Peter Rowe.

[Jenna Montgomery · Rating 5 out of 5]

While some of the info in this book is now outdated, the basic concepts within are still almost all valuable to a person with hypermobile EDS. This book really does provide a number of pratical and logical steps to living life with EDS, for both the patient and the medical providers that work with them.

I am very happy to have this basic but important factual info and will likely share sections of this book with my healthcare providers (although not the whole thing since there are out of date parts that an unfamiliar physician may not realize are out of date/have been updated/have been proven incorrect).

There are a lot more types of EDS identified now, along with a number of comorbidities, and much of this has recent research that came out after this book was written and either confirms some of the clinical observations made by this doctor, or proves that some of the theories from that time frame where actually incorrect.

I would also ignore the entire section on chronic fatigue as it is out of date and based off of studies that have been thouroughly discredited for improper research techniques, bias, and conflicts of interest. It also erroneously refers to chronic fatigue and chronic fatigue syndrome as the same thing, which is widly innacurate.

[SA · Rating 4 out of 5]

The best text out there for the patient at this point in time, but far from the kind of peer-reviewed research and treatment methodology that should exist for those managing this condition. Tinkle does a fine job of collating and outlining all that was known at the time of publishing and contributed information from his professional experience in practice treating hypermobility. It was helpful to me primarily by re-categorizing symptoms that I hadn't known were correlative to hypermobility (which is itself a very recent diagnosis for me) and helping to outline the boundaries of my iteration of the condition.

I sincerely hope a revised and expanded version of this will become available in the next five years.

[Jey The Moose · Rating 4 out of 5]

Since this was written in 2010, I thought it might be a bit out dated, but it was surprisingly still relevant to me. Although I am aware some of the science has changed, most notably the established changes in 2017.

Most of the book was loaded with information that made it feel like it was more directed towards health care professionals, but I love to read that kind of information, so I enjoyed it a lot. However, for those who just want the "guide" part, the "how to cope" part starts on page 169. 😊 There are a lot of helpful tips in this section, though I do think it could have more in it at the same time.

Anyway, I'd be interested to see an updated version of the book. It would probably be twice as long woth how much more has been done with research around hEDS!

[Nikki · Rating 4 out of 5]

I'm newly diagnosed. This book has been very helpful. It's a great resource.

It's lacking in certain chapters (they can be very short which can be a problem if they're about a fairly major issue that you're having).

It's an easy read. I read through it all the way through even though it's more useful as just reference for individual issues.

[Fern A · Rating 5 out of 5]

While some of the terminology is a bit outdated now (but then medicine and science has changed a lot and terms about EDS have changed over the last few years) this was an incredibly helpful book. It gives a good overview and the list of resources at the end of each chapter is very useful.

[Michelle Eppinghoff · Rating 5 out of 5]

Very informational book. The binding makes it difficult to read toward the end.

[Erica Blake · Rating 4 out of 5]

This was a good starter book as a guide.

[Cat Roule · Rating 4 out of 5]

Great information contained in this small, easy to read book.

[Nicole DiGiulio · Rating 4 out of 5]

Really educational, but some information is missing or outdated now. Hope that he revises because I learned a lot!

[mama housemouse · Rating 5 out of 5]

Great reference book. Helpful for looking ahead and knowing what to watch for. Touches on everything, and is chock-full of sites & books for future reading on specific topics.

[Holly Taggart · Rating 2 out of 5]

Obviously this book was purchased not for pleasure reading, but to try to learn a bit more about my big loss in the genetic lottery!

Overall an interesting book, and somewhat helpful. I think it would be more helpful for younger persons who are learning to cope with this syndrome. It is especially helpful for those who work with people with hyper mobility problems, as there are sections for many areas, such as Massage therapists (recommending specific techniques and explaining why certain things that are particularly helpful for most are essentially useless for people with hypermobility.

I feel this will be a useful book as I continue my hyper mobil life, but I have to say the particular education was POORLY put together and bound TERRIBLY as some of the words on the pages and actually pulled into the binding, making the book very difficult to read. Since it was not inexpensive, I was especially displeased with that. (I think it's because it is not in high demand, so can't blame them, but really?)

So yes, I have read this. I was hoping of course for a key to remain injury free, and it does not contain that...but it did have several helpful tips that I can add to my small bit of knowledge.

[somnomania · Rating 2 out of 5]

I can't complain about the content; it was informative, covered all the questions I might have on the subject, and was sufficiently up to date. However, the formatting and general errors throughout make it just shy of unreadable. The margins are almost nonexistent, there's no index (and in a book that claims to be a guide of any sort, that is perhaps the most severe of its problems), and there are a multitude of spelling and grammatical errors, and other places that are just written badly. I emailed the publisher about all of these thoughts, and I got what appeared to be a stock "thank you for contacting us" reply. If there was a subsequent edition with better formatting and a more stringent editor, I'd probably buy it, and set fire to this copy out in the yard.

[Maia · Rating 4 out of 5]

This was definitely a helpful reference (if only to make me feel like I'm not making everything up) and I plan to share it with any argumentative/dismissive future health care professionals. But Dr. Tinkle loses credibility with the book's egregious grammar (sentence fragments and comma splices drive me crazy), spelling (protip: 'effect' and 'affect' have different meanings) and formatting (the margins!). This book needs an editor! I would honestly edit this for free with my own time just to make it appear the iconic and trustworthy resource it actually is.

[Bill · Rating 4 out of 5]

Although over 200 pages, there is considerably less content in the book than the first impression implies. I also agree with some other reviews that the formatting and layout could be greatly improved.

Overall though, the book provides a great overview of Joint Hypermobility disorders as well as various coping methods. I got this on Inter-Library loan and the checkout period was only about a week. I will need to get this book again in the future and dedicate some more in-depth reading time to it.

[B · Rating 4 out of 5]

I'm in between three and four stars on this one. it's a quick easy read with a simple easy to follow layout however it's riddled with the annoying aforementioned grammar and layout foibles. it's at times quite repetitive and filled with quite a bit of idealistic adages you'd expect to find in a book about coping with chronic illness. it contained a lot of information that's easily accessible online but it's worth the read to connect the dots of issues and habits you may not have realized were due to underlying ed/hypermobility.

[Valerie · Rating 4 out of 5]

Reading this book was like reading the manual to me. I learned so very much and finally have explanation for a thousand things. I could see things could be much worse, and for my health I am grateful. This was a very informative book with lots of great back ground and references. It's a bit hard to read, as it has really small margins and font, so you have to push the book really flat to read all the way to the center of the book. I know older people that could not read it.

[Leslie · Rating 3 out of 5]

Helpful if not super well-written. My doctor actually recommended that I read Tinkle's books to gain more insight on my slight case of Ehlers-Danlos and how it factors into my genetic migraines. This is good for explaining all of the basics, and it offers many ways of coping and solutions for daily life for those with mild to severe cases. I ordered both of Tinkle's through my library's ILL department, and I'll see how they measure up to one another.

[Natasha · Rating 5 out of 5]

As a book, it's not perfect: There are typos, formatting problems (painfully narrow gutters), and some inadequately edited awkward phrases. As a resource for an EDS-HM patient, you can't do better than this book at this time. Nearly every page made sense of a problem I have or gave some valuable advice for surviving and coping.

[Rowan · Rating 3 out of 5]

This edition comes before the one with the sunflower. I had gotten them both and was a bit angry that it was so hard to know they were the same book, just different editions. Good book, just a bit out of date, hence the new one.

[Paula Johnston · Rating 5 out of 5]

This book was invaluable in providing information to help me come to terms with my Joint Hypermobility Syndrome aka Ehlers Danlos Syndrome. I would recommend it not only to sufferers but as a great resource to families of sufferers wanting to understand more about the illness.

[Jenna · Rating 4 out of 5]

This is one of the only books on wide spread joint hypermobility. It is a great introduction for people newly diagnosed with ehlers danlos syndrome.

[Stacey · Rating 5 out of 5]

I need to get this. My son has been diagnosed with HEDS.

[Tammy · Rating 4 out of 5]

Well laid out chapters on Ehlers Danlos Syndrome. Easy for referencing information which I do often.

[Carrie · Rating 4 out of 5]

A great, quick read. Lots of info for the layperson; Dr. Tinkle is THE go-to guy for EDS expertise. I do wish it was a bit more in-depth, though.

[Tracey · Rating 5 out of 5]

Awesome resource!!