My EDS (Ehlers-Danlos Syndrome) Journey: Medical and Personal Journal Diary – June 8, 2012

As an NICU RN who routinely discharges patients with complex multi-disciplinary medical issues this book is a find! I wish we had it available for all complex chronic patients! As a person with EDS and the mother of a child with EDS this is an excellent tool to organize date. It will take you a day or two to add in all the names,phone numbers and dates.... but then you have it all in one place!

I bought this for my husband for Christmas. Being new to EDS I wanted to get him a book about it and the other book written by Tinkle was out of stock and this was not what I was expecting. It's very thin and just a journal for 45 dollars. I'm sure we'll use it but I am disappointed.

Was not at all what I expected.......especially for the price! Basically paper with hardcover and bound. Just very disappointed with it.

I was just diagnosed with the Hypermobility type of this disorder. Ehlers Danlos Syndrome is not a well known disease but it's effects can be very debilitating. At this point in time, there are few medical professionals with extensive knowledge of EDS. This is one of the reasons My EDS Journey is essential for an EDS patient to carry with them throughout their quest for medical care. Individuals I am acquainted with, that have purchased this book, have highly recommended it to me as one definitely needed for each and every EDS patient. Patients may record their own medical information in this volume and may also use the included forms and information to assist their doctors in providing care. EDS Awareness is also greatly needed and My EDS Journey can help patients in providing awareness to their families and medical professionals. This book would also be a great gift for a patient with EDS or for a doctor's office to have as resource material.