An Accident Waiting to Happen: a life with ehlers danlos syndrome

As a person with Ehlers-Danlos Syndrome, who wasn't diagnosed until I was almost 40, I really enjoyed this book. Not because of his struggles, because struggles in Ehlers-Danlos are all too real, but because of how he told it and how he helped explain them. EDS is rarely diagnosed, but not in itself a RARE disease. It's just a disease that mimics so many others and looks just like other things, so it's a true "Zebra" disease. They call diseases like that Zebras because when doctors hear hoofbeats they think of horses, not zebras. A Zebra is a disease which can look like or mimic other diseases, and there are many of them.Mr. Howard has written a book about his life with EDS, and he was diagnosed fairly young, which is unlucky and lucky depending on how you look at it. He's proved to live a very full life, but one full of emergency department visits, and more.

" An Accident Waiting to Happen" is a beautifully written, lyrical book, penned by my quite amazing online friend across the pond, Phill Howard. Other than a difference in gender and nationality, our stories are quite similar. It's wonderful to have a first hand account out there of what it's like to live with Ehlers-Danlos syndrome, which is often ignored by the medical community, and, frequently, dismissed by friends. Many of Phil's accounts of his EDS journey brought me to the edge of my seat, because it reads like an adventure story. Then, I remembered, that this is my life too, and the lives of so many yet to be diagnosed. If you have Ehlers-Danlos, buy a copy, and buy one for your doctor, if you are able. Or read "An Accident Waiting to Happen" through the library. This book is a must read for those who love someone with Ehlers-Danlos. " An Accident Waiting to Happen" leads us one step closer to better EDS awareness.

I just finished this book. I couldn't put it down till I was done. It's a very good read! I also have Ehlers-Danlos. I greatly appreciated the honesty and clarity in this book. He shares his journey with the reader, warts and all. I've been given a great deal to think about.

This book was spot on. It describes how your body does things you have no control over, and it happens regularly. I felt like Howard had been shadowing me when I read it. Due to illness I haven't really read books like I used to. This one was read in 2 days, and I read it using my highlighter. I gave it to my Dr to read and shre with other EDS patients. The best book I have read about the disease, that very few people, even in the medical world, know about. Kudos to the author.

Great read!

Amazing book, as a Ehlers-Danlos patient myself, I really related well to his stories and it helped me come to terms with my accidents as well. The writing was very well done.

I have this syndrom and I find the book very informative. Reasonable and speedy seller

Even though I am in America and some of the phrases were different, I thoroughly enjoyed this book.I could relate to many of Phil's accidents waiting to happen.

Anyone with EDS will have more in common with Philip Howard than simply an often unrecognised medical condition. His description of childhood accidents and adult catastrophes will strike a chord with both sufferers and their families. The book isn't only a chapter of mishaps, however, but a serious look by the author at the psychological scars left over the course of his life, and it's in this that the book's real value lies.Although I suspect that many of the book's readers will be those with EDS themselves, hope that this book will find an audience beyond the EDS community, because it has much to offer those unaffected by the syndrome - most immediately, perhaps, to partners and unaffected family, for the insight into the mind of the sufferer. I found the passages about Howard's marriage particularly compelling, reading from both sides, as it were, being both the partner of someone with a chronic condition and as a sufferer. I should add that these insights apply just as readily to people with other "silent" illnesses - ME/CFS, Fibromyalgia and similar - who will recognise many of the issues, ranging from difficulty of diagnosis to the commonly met "But you look fine!"

Like the author I too have Ehlers-Danlos Syndrome. I can relate to all of his confusion, hurt, and pain. EDS means pain is a constant part of your life, be it physical, emotional, or both and trust me when I say it's usually both. I also have a daughter who shares in the challenges of living with EDS and I feel the guilt of having pass it on to her every day (it will not be passed to another generation of my line because my daughter has refused to have children as she doesn't want to see a child suffer as she has). Unlike the author I had no idea what was wrong with me and I believed all the comments and jibes about being clumsy and accident prone. I was finally diagnosed at the age of 42 which was both a relief and painful. I have lived my entire life with guilt and feelings of inadequacy due to a faulty gene that I could have done nothing to change. This book deals with the emotional side of having EDS but he doesn't want pity or even sympathy, just understanding. I believe that is all any of us really want- to understand and be understood. We don't want pity our special treatment, just to not suffer any more than we already must do. EDS is available endurance test that you aren't allowed to fail. The author demonstrates his ability to bounce back time after time. It's an example to us all, with or without Ehlers-Danlos Syndrome.The author calmly and quietly relates how confusing, embarrassing, and painful EDS can be. He shares the emotional pain of having passed his condition on to his children and grandchildren with grace and without self pity. His book is honest, simply told, and imparts his experiences of the condition impartially.

This is a very good book, well written with some interesting anecdotes and deals particularly well with the difficulties of having an 'invisible' chronic disability. As a GP and also a sufferer of Ehlers-Danlos Syndrome this book resonated very strongly with much of my experience ranging from the difficulties in being taken seriously, to taking yourself seriously and recognising the need to seek help, as well as the emotional impact of pain. I would recommend this book to any health professional as it spells out the importance of listening to our patients, keeping an open mind, believing what they say and accepting that they may know more than you.

A great book to help to understand the condition and helps to see how others live with the condition day to day. Thanks

A must read for anyone or any family effected by EDS! No matter what type you have we all go through the up's and downs of this chronic condition and Philip has really made me think a lot about things and how I can change my thinking towards the condition that weighs me down on a day to day basis!