The Essential Guide to Managing Ehlers-Danlos Syndrome Hypermobility Type and Hypermobility Syndrome: A Comprehensive Handbook for Joint Hypermobility

Crystal: This book has been extremely helpful. In fact, my daughter was referred to Dr. Tinkle in January. I wish my daughter would have been referred to him sooner. It was the most informative, insightful, and validating appointment that my daughter has had. We literally got into the car afterwards and she broke down because she finally felt completely understood. For that, I am so thankful to him. I would love to see another book from Dr. Tinkle in the future! I hope he knows the good work he is doing for his patients.

United States on May 28, 2023

InASense: So this book was recommended to me by the physician who diagnosed me with H-EDS. It is good and there are some parts I think are worth reading however much of it is readily available online and the science has evolved some since the book was published many years ago now so that is something to take into account. I should also mention the author is top of the field in this and is on social media and it is worth following him and his work if you have H-EDS. I do still believe this is a good addition to those trying to understand connective tissue and joint hypermobility. I would also consider ordering Disjointed along with this if you or a loved one has been diagnosed with H-EDS.

United States on Dec 07, 2022

Rivky Porgesz: Excellent informative book, unfortunately I lost the book will need to reorder

Canada on Nov 29, 2019

prplpixyfairy: While some of the info in this book is now outdated, the basic concepts within are still almost all valuable to a person with hypermobile EDS.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and will likely share sections of this book with my healthcare providers (although not the whole thing since there are out of date parts that an unfamiliar physician may not realize are out of date/have been updated/have been proven incorrect).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...

United States on Dec 27, 2018

Dysordra: This book is great for learning more about hypermobility syndrome, beyond the obvious flexibility aspect. It's given me a lot of insight into various issues that I didn't really even know we're issues, as well as a possible explanation for my decade-long chronic headache, which I can now discuss with my GP. I feel this is important, because all doctors can't be experts in every obscure disorder, so it's important to know your own body in order to meet them half way. I feel like I am better able to identify if something is abnormal now, rather than "what do you mean that's a weird angle for my shoulder to be at?" or "you mean you've never felt like your skull just doesn't sit right on your spine?"

I was initially worried that this would be a tedious read, but the format turned out to be very easy to get through in just a few hours. The language is accessible without being condescending, and the entire book is thoroughly referenced at the end of each section.

A really great source for anyone with EDS/hypermobility!

United Kingdom on Apr 13, 2016

Jo Bradley: This is an absolute must for those with EDS as it will help you to approach not only your Dr's to explain what you need, but also your life itself - yes, many things I knew already, but it sort of helps to see them written down. It is written with US in mind, but many of the comments cross over into UK situations so would recommend this to UK EDSers too...

United Kingdom on Jun 03, 2014

Nicole E.: Ich habe lange im deutschen Sprachraum nach einem Buch gesucht das die Zusammenhänge/Auswirkungen der Erkrankungen HMS/EDS gut und verständlich darstellt (ich bin versierter Laie). Leider bin ich auf deutsch nicht fündig geworden, habe aber dieses englische Buch durch einen Tip entdeckt. Es ist leider nicht in deutsch erhältlich, aber sehr lesenswert. Es werden viele Gebiete der Erkrankungen angesprochen und auch logisch nachvollziehbar erklärt, gut auch geeignet um es mal dem eigenen Arzt mitzubringen, denn geschrieben wurde es von einem Kinderarzt der auch Genetiker ist.
Ich kann es wirklich nur weiterempfehlen.

Germany on Mar 02, 2014

Mona1990: If you've been diagnosed w/Ehlers Danlos this is your bible. This is the only comprehensive book that covers the many effects of EDS on the other body systems & organs. Women patients especially need to read this book! The format is easy to follow & allows you to quickly find any chapter to reference later. I took this to all my doctor appointments following my diagnosis & it allowed my doc & me to follow symptoms & get proper tests for the many sub-syndromes this disease causes. We were able to tick them off one by one & rule out ones that I don't have. This also helped my doc to know best how to treat these other conditions. It also allowed me to self-diagnose & thus be able to ask for specific testing to confirm. This book answered 38 yrs of unanswered questions & helped me to get proper medical treatment & care. I also understand what is best for my body now & don't feel so frightened during POTS episodes. You will need this book if you or a loved one is diagnosed w/an EDS Type. Doctors don't know about this disease & don't know how to treat it. Period. This book allows you to once again be your best & strongest advocate. And if...

United States on Mar 26, 2013

Vastra: This book from Dr Tinkle and this textbook: Hypermobility of Joints - Beighton et al 2012 - ISBN 9781848820845
are excellent to share with your primary care doctors so they understand what is going on and can treat more effectively.

Dr Tinkle, thank-you for caring for us and helping so much and in so many ways, all the best to you!!!!!!!

Canada on Apr 28, 2012

joy: Wow ~ what can you say about Dr. Brad Tinkle that hasn't already been said here. Well I'll share a bit. I purchased his first book right in the middle of a terribly frightening time in my life ~ experiencing the new onset of significant pain in nearly every joint in my body in my 5th decade of life...postoperatively. Post-operatively in a new way - two artificial knees - and in an old way - 3 year old hips. Burning my way through that book ~ had the light go on in a huge, huge way ... & I began my quest for diagnosis of some type of connective tissue disorder.

The diagnosis of Hypermobility Syndrome was forth-coming & Dr. Tinkle's book shed so much light I actually would fall asleep at night with the book right by my side as I would read & reread to learn. Through the book I began to gain in small steps some appropriate medical care. Granted I drove everywhere to get it ~ and even endured the age-old, "get counseling ~ it can help fatigue" - while trying to ignore side-long glances. Yet I persevered because I KNEW Dr. Brad KNEW what he was talking about. He was my light at the end of the tunnel. I gave the book to my doctors and happily some took it most...

United States on Sep 22, 2010