Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome
Brad T Tinkle
This book can be downloaded and read in Apple Books on your Mac or iOS device.
As a followup to his previous best-selling book, "Issues and Management of Joint Hypermobility: 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 language: "...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 categories: • 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.
Has some great info and some info that is outdated
My family is affected by Ehlers Danlos Syndrome and I happen to have ME/CFS (called in the book chronic fatigue syndrome). The information provided for treatment is unfortunately dangerously outdated. In most illnesses the recomendation of CBT (a type of mental health therapy) and exercise might not be dangerous and even a good idea. Unfortunately the definition of CFS is also quite wrong in the book and I caution anyone who reads this book not to take that one section at face value. ME/CFS is a very serious set of illnesses on their own that are well defined and have been recognized for many years and the focus of neglect and poor research for decades that is finally being overturned and combated. You can find plenty of information on them online through various patient groups and youtubes. The time that this book was published was around the release of a majorly problematic study in CFS history which including manipulation of the results by the researchers and advocated the treatments recomended in this book. While there may be the high precense of chronic fatigue the symptom in EDS and hypermobile patients, this will not always qualify for a diagnosis of CFS/ME/SEID (see the IOM report, the CCC, and the international consensus criteria). I really appreciate this resource existing as it definately makes all the “weird” things my loved one experiences that doctors might not believe (but I do because I see them) have been demonstrated and a simple dedication to a short book could validate and get her treatment. But I also caution anyone from following outdated, incorrect, and poor treatments for other illnesses that Dr. Tinkle’s practice does not specialize in and doesn’t seem to know much about (in 2010) on myalgic encephalomyelitis/chronic fatigue syndrome. Six months of persistant fatigue is not enough to have CFS. CFS is a syndrome of greater complexity than that, and includes post exertional malaise, abnormal responses to exercise, autoimmune, dysautonomic, headaches, gastrointestinal problems, swollen lymph glands, and others. Please consult your own physician (who will probably know very little) or a specialist who has been aware of this disorder for at least 10-30 years and knows what they are doing. ME is actually pretty rare and sometimes considered a subtype of the greater family of hetergenous disorders that make up CFS. CFS while more common won’t necessarily be what you have and should be treated appropriately and tested and confirmed equally as much as EDS. If you keep exercising through it and try to think your way out of it with CBT you won’t get better and you may blame yourself and that isn’t fair. With that said the book is 7 years old and was published during an unfortunate time in ME/CFS’s history, and it does only include 1-3 pages of information on it. However it is important that if you read this and think you have CFS based on the definition used in this book you are barking up the wrong tree with CFS… it is a lot more than what is summarized here. Sorry for the rant, as I said: the book is very useful, unfortuantely some of the sources-links are broken currently. I appreciate a the books existance as it will help my EDSer long term and the digital format is far preferable to the published version that is currently on amazon as many people have said it causes joint pain to read due to a bad binding. Thank you Dr. Tinkle for dedicating your career and writing this book to EDS and hypermobile patients, I do hope you update the book at some point (with correct information on ME/CFS/SEID :) ).