There are several books which we have listed here on our website about Ehlers-Danlos Syndrome (EDS) and common related condtions. The problem is you can't always tell how helpful they will be until you get them. So we are working through our own library of books and getting some reviews up.
Our first review is the book by Dr Chris O'Callaghan who is a clinical pharmacist with a special interest in Dysautonomias in Melbourne, Australia. Dysautonomia is an umbrella term for disorders of autonomic dysfunction like postural orthostatic tachycardia syndrome (POTS). These disorders are very commonly associated with EDS so this can defiantly be an important subject and also has a section on EDS and joint hypermobility.
Published in 2022 this is a relatively new book, but patients of Dr O'Callaghan will have had access to unpublished copies and print outs for several years, so the content is relatively up to date. This book is not a medical text and is written for the patient in mind. This book covered segments of many different patient accounts liberally peppered throughout the different sections. There is also a minimal amount of physiology/anatomy to help with basic understanding of what is going on medically without being overwhelming.
In the beginning Dr O'Callaghan does go over the many different names for this condtion, dysautonomia, POTS, Orthostatic Intolerance etc and bundles these altogether under the POTS/OI label for ease during the rest of the book; further going on to discuss common symptoms, diagnosis, Joint Hypermobility, Treatment and more. While there is no definitive explanation on the cause of these conditions this book heavily leans on the impact of low blood pressure (hypotension) being if not THE root issue a big one; it's the villain of this book as he so aptly says at the start. Initially this was a little problematic for me as my blood pressure never seemed to go down too low, so I worried this book might not be for me. I did however enjoy this book and had a few takeaways that might relevant personally. I definitely enjoyed and was glad I got the book, but personally don't see me reaching for it regularly to reference at least personally. I am sharing it among my many health professionals.
The EDS section is short and sweet seeing this book is not focusing on this disorder. Some people may have issue with hypermobile syndrome disorder (HSD) being called the "milder" version of hEDS - but this is the problem with writing medical based books information will evolve and sometimes quickly once published. The author does go on further to acknowledge HSD can cause quite severe symptoms thankfully. The written examples and quotes from appointments do help give some visuals for the imagination for what can be a very visual diagnosis for joint hypermobility. Currently it's not known why such a high percentage of patients with EDS (some articles cite up to 88% of EDS patients have POTS too) Dr O'Callghan suggests stretchy blood vessels as the leading theory but yet to be proven.
This book is well laid out with the audience in mind. With over 190 pages this might seem daunting to the brain fogged among us, but it's well spaced out and paced. It's also a book where it's not required to be read front to back. The author themselves describes this more as a manual rather than a novel. Thankfully while medical based I didn't feel I had to translate ever 5th word from a medical dictionary so that was helpful and allowed me to quickly get through several chapters quickly. I also enjoyed the humour that I needed throughout the book and hearing the voices of the patients helped paint a more human picture I could relate to rather than a clinical outline. Key points for each secrion are thankfully reiterated to help the brain fogged among us. I also noticed the colours used in the book is the same teal used for Dysautonomia/POTS awareness - nice touch.
I would recommend this book mainly for the newly diagnosed or struggling with POTS/Dysautonomia or patients who are suffering from the symptoms listed in the title who have got no where finding the cause. I think those who are well into treatment and stable or looking for something more clinical will still like it but might find this is a concise summary of what they have spent years researching.
A concise light summary of POTS/OI.
This book was purchased privately and all views are that of the author only. This review is done just to give a general exposure of the contents to help people decide if this is worth the read for them.
If you have your own review of this book or other EDS books you wish to have published on the blog please email us at ehlersdanlosaus@gmail.com
This book can only be purchased through Dr O'Callghan's offices, but their lovely secretaries are very happy to be contacted by phone and post to Australia. While I can't remember the full price with shipping it was <$50 AUD ($40ish + shipping)
For more general info on POTS checkout athe Australian POTS Foundation.