A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type)

As a H-EDS, i highly recommend this not just for validation and relation; also for insights and what to look out for. The legit references from experienced medical professionals, and medical books help me to talk more openly to my doctors about what im going through. I highlight and bookmark and i bring to all of my eds related appointments. I recommend to friends and family. I share the parts i relate to and i feel more empowered because it harder for people to assume that " its all in my head" when the "unusual stuff" is in words of Drs and other eds'ers a like. Showing its not unusual at all.. for a eds'er! I keep a notepad and sticky notes with it. Will buy a study tipe book case soon so i cause to much damage.

Weirdly, though I have done a ton if research into a variety of conditions for clients, this was the first deep look into my own that I have done.There is quite a bit of useful information in here, and some of it helped me to deal with the winter plague I am currently experiencing.However, it also showed the stark differences between healthcare in the UK... And in the US.

Having recently been diagnosed with EDS I found great comfort and help in this book by someone who herself has the syndrome. It was encouraging and full of great information and advice. There may be other more helpful books out there but I ended up buying this after first reading it through an interlibrary loan. The only point worth making is that the author is British and terminology and treatment approaches are somewhat different there. However, that does not diminish the content of the book concerning EDS and I actually appreciated learning what England has to offer those afflicted with this. My son shows signs of EDS and I am planning on passing this on to him once my husband reads it and I reread it.

This book, while having a lot of good information, and even including facts about the relationship between hormones and EDS that I wasn't aware of, still doesn't quite present a full, organized picture of EDS, and its treatment. While there are a lot of suggestions for potential therapies that might help with pain, fatigue, or mental health, most of the recommendations seem to be based in either the author's personal experience or in anecdotal recommendations by people she knows. While presenting case studies and true life experiences with the elements being reviewed in the book is interesting, and usually helpful, I feel that this book is too slanted to the author's personal experience, rather than an objective review of the syndrome and proven therapies and and treatments. Most people with EDS are not dancers, and this book has dancing liberally sprinkled throughout - almost like Dancing with EDS was the book the author really wanted to write. Also, much of what she says regarding healthcare and support systems only applies in the UK, which isn't very helpful for readers in the United States.

This book was so helpful! Just what I’ve been looking for.

A lot of outdated research, terminology, and treatment, but for the most part it's a good basic guide to trying to navigate life with symptomatic Ehlers Danlos Syndrome.Just got hit with symptoms in your mid 20s and they took doctors, yourself, and everyone else forever to connect and do a gene test for (or clinical dx but are waiting for a gene test?)? This is a good place to start.....but don't stop here please. Don't take this book as the gospel of EDS. Continue to research your subtype with the research being done in France, UCLA, and compare treatments in different countries to see what's the best route to take.

PLEASE FIND A BOOK BY A MEDICAL AUTHORITY TO LEARN ABOUT EDS!This has to be one of the dumbest books that I have ever had the displeasure of reading.NOT A GUIDE TO LIVING WITH EDS!!!! It's a story from some woman who thinks that she is an expert on EDS.This whole book seems to be devoted to the author's poetry and person stories.If you don't know anything about EDS, then maybe up to chapter 8 would be useful, but again IF YOU HAD NO KNOWLEDGE OF EDS. Most of us have a lot of knowledge, before we start looking for books to read. This book is not the most accurate, so please FIND SOMETHING ELSE.The author chooses instead of giving information about associated conditions, to talk about her experiences with the conditions. This is not a GUIDE!!DO NOT LISTEN TO THIS WOMAN ABOUT STRETCHING!!!!!! If you speak with your (educated) rheumatologist, they will tell yoga (and most will also include pilates) should be avoided. This woman advocates pilates for EDS people. She also talks about circuit training----running stairs?! EDS people should not be doing any exercises that put strain on your joints. Exercises for EDS people need to be for strengthening muscles, without putting strain (or as little strain as possible more accurately). These exercises may include swimming (avoid over the head work especially if you had difficulties with your shoulders), walking, and perhaps light cardio, such as using ellipticals. Speak with a doctor, not this quack who has obviously not done any real research. LIGHT weight training is also recommended.Ballet is TERRIBLE for EDS. For correcting posture and learning sense of your body, yes, BUT NOT AS PUTTING STRAIN ON JOINTS!!! You go to a physical therapist, not a ballet instructor to fix these issues.Her desire to blame everything on EDS is out of control. Trying to blame EDS for cognitive problems, without recognizing that depression and fatigue can cause the cognitive problems . . . she really has no idea what she is talking about.

Very informative. Great guide for anyone with hypermobility issues.

A big help for health practitioners like me who are seeing more patients with this condition

A great book for anyone diagnosed with either Hypermobility Syndrome or Ehlers-Danlos Syndrome Hypermobility Type, or someone who may want to learn more about the condition.Isobel Knight writes everything in plain English with no technical terms and includes pictures of various things including traits associated with HMS/EDS-HT.I was diagnosed in 2012 and have found Isobel's book to be a great help in both understanding the condition and the secondary health problems that can be associated with it. She gives an insight in to which other parts of the body can be affected by the condition and in what ways they are affected.This is the newest edition of the book. I had the previous edition (A Guide to Living with Hypermobility Syndrome) but bought this one when it was released and gave the other to my GP practice.

This is a short but very detailed book, packed with professional opinion, case studies and personal experience, as well as research. It is a very comprehensive guide through the extremely complex world of EDS. I am a complementary therapist and it has helped me tremendously to provide reassurance and understanding to clients with EDS. Medics still routinely refer to EDS as 'rare' but that is not my experience and it can be extremely debilitating. Its complexity seems to be hugely challenging for conventional medicine and diagnosis remains difficult for many sufferers.If you want to understand the wide range of symptoms that EDS can include, I recommend reading this book. If you suffer from EDS the information in this book will be very supportive.

How is it possible to extend thanks to an author who wrote her experience of her condition, in a book for others to share. That not only gives insight but an understanding, for a condition when all other areas of medical expertise have let you down? Simple... You say Thank you...Well written and informative, without being patronising.A must for all suffers, parents/carers of those suffering from the condition or medical practitioners...

I was diagnosed with HEDS 8 years ago and though I have learned to manage it, I hadn't learned to accept it. This book is helping me to see that there are people that understand and that I can still achieve my goals despite having this condition. I would definitely recommend this to anyone who has recently been diagnosed and believe it should be recommended by diagnosing Dr's!