EDS Survival Guide: 5 Keys to Thriving with Ehlers-Danlos Syndrome Paperback – 4 Nov. 2021

As someone who's been diagnosed with EDS as well, this book really resonated with me. I identified with so much of Ms. Zappone's story of her life and it was validating for me; I have a tendency to question if I'm "really that bad" on my good days. The keys she gives for living with this condition are solid and useful information. I would recommend this book to anyone who has EDS and anyone who has someone close to them who has been diagnosed with the condition. I can't say enough good things about this book!

Most of the short book about EDS that I've bought disappointed me. This one was a great surprise. The author share her story with honesty and sensitivity, which makes her advices really understandable from her perspective. I really liked it, it was a good surprise.

An excellent resource for anyone who suffers from EDS and their loved ones. Once you get the diagnosis, there is not much information out there to begin with, but this book offers personal recommendations (the author is not a doctor, but a patient who has EDS) and sometimes that's what you need. If you have it or know someone who does, make sure they get this book.

This is one of several books I bought the day a 38 year old mystery came down to an Ehlers Danlos type H diagnosis -- finally my daughter's odd health issues, many of which seemed random, were tied up in a bow and presented to us. Oddly, my sister in law has this rare syndrome and it distinctly runs in her family, so I did not realize that genetic disorders have to start somewhere, likely but not definitively with my daughter in our case. Really, this feels more like a memoir and a "how I did it" book than a self-help book, which is what I expected. I liked it though. And there are certainly takeaways.I read this in one sitting. I did NOT give it to my very overwhelmed daughter yet, but sometime I will. A lot of Zappone's experience is similar to her issuess as well as similar to her aunt's, but some of the ways they are different (so far) are scary and she is already imagining worse to come. Fortunately, while the specialist we hoped to see has a 1.5 to two year waiting list, we found a good doctor this week (after a couple months) who has a good holistic approach. So we are off: to a new round of tests, to a physical therapist who specializes in hypermobility, so learning (slowly) about best practices and tweaks needed in her care for the multiple conditions she has that fall under this umbrella. Mistakes have been made but so far none that caused permanent damage. I know that my daughter will appreciate this book sometime in the coming year and I'll know when she is ready to dig in.

As a fellow EDS sufferer, I found this book to be unexpectedly enlightening. Unexpected because Ms. Zappone's experience has been very different from mine, and I found myself disagreeing with her on one or two points, but that only enhanced my reading experience. Ms. Zappone emphasizes frequently that one size does not fit all when it comes to dealing with EDS, and the book is structured so that each reader can apply its lessons and tips in ways that work for them, not ways that she thinks "should" work (a breath of fresh air to any EDSer who has dealt with strict doctors!). This book will be helpful to anyone struggling to accept their EDS diagnosis, or who feels overwhelmed by the realities of living with EDS day-to-day.