The last 3 years of my personal journey living with Ehlers Danlos have been especially challenging. I have been blessed, however, by an incredible team. In an effort to be more active with my blog posts, I thought the topic would be a great place to start.
First things first - what resources can you get your hands on quickly? Here are the books my team suggested - the ones that I bought and will keep as a part of my permanent library.
Disclaimer: As an Amazon associate, I'll get a commission if you purchase either of these books after clicking the link. I'm working on some passive income options while on medical leave for my hip surgery!
- Disjointed Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Edited by Diana Jovin. My EDS MD wrote a few of the chapters, so I obtained this one first. It is incredibly detailed and covers all aspects of the syndrome.
2. Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS by Kevin and Kathleen Muldowney. This book peaked my interest as a PT. It looks intimidating in its page length, but consider it more of a book that you only read one chapter at a time until you have mastered that level of physical therapy. It is not expected that you finish this book right now. I loved that each section has a portion to read for you, the one with EDS, and a matching section for your physical therapist to read as well. Not every PT specializes in EDS. This book is helpful to bridge that continuing education gap.
What about online resources? I found a fair amount of useful information at the EDS society website. According to their website, May is EDS awareness month. I guess the recent onset of seasonal allergies had me thinking about my EDS, so that makes sense.
Dazzle on, zebras.
Ashley Haapapuro
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