The Dysautonomia Project

by Kelly Freeman, David S. Goldstein, Charles R. Thompson

Understanding autonomic nervous system disorders for physicians and patients.

The Dysautonomia Project Book is an easy to read introduction to disorders of the autonomic (automatic) nervous system (ANS). It has been written by physicians & patients for physicians & patients. The book is designed to:

- Facilitate a better dialogue between doctor and patient
- Be a helpful reference for physicians and others in the clinic or hospital setting
- Serve as a core text for the Grand Rounds CME Course

Core chapters are written with patient information on the left and physician information on the right of the book. This layout helps the physician and patient have a more meaningful dialogue. It also helps the patient to prepare well before diagnostic tests and follow up appointments. Academic chapters written by top researchers in ANS disorders and related conditions summarize key findings in recent research.

This book is a collaborative effort of many volunteer physicians and patients to speed the time to proper assessment and treatment of patients with dysautonomia at the community level.

Genres: Health, Nonfiction, Science, Self Help, Medical, Disability, Research

222 pages, Paperback

First published January 1, 2015

Reviews

[Carissa · Rating 4 out of 5]

A great starting point for anyone new to the realm of dysautonomia. The information, for better or worse depending on the reader, is easily digestible and understandable. Those with medical knowledge may find it a bit too basic, but there is still new information inside. My only real complaint is the formatting - not just that it needed an editor, but rather than have the different sections be split by even and odd page numberings, it should have been a front section for patients and a back section for clinicians.

[Emmie · Rating 5 out of 5]

Very informative and easy to read. This book helped to educate my friends and doctors as well as explain things easily in a way so all can understand. Amazing book!

[Jenna · Rating 4 out of 5]

Very informative and easy to understand book. Would recommend to anyone with POTS

[Melissa Kelleher · Rating 4 out of 5]

A good first book to learn about dysautonomia. I liked the format of patient info on left pages and physician info on right pages.

[Heather Voelz · Rating 4 out of 5]

Nice little reference guide to dysautonomia. I don't love the layout (the patient/clinician split), but other than that it was very helpful.

[Lauren K · Rating 4 out of 5]

Good information, distracting format. The book has patient info on even-numbered pages and physician info on odd-numbered pages, and since I wanted to read both it felt very fragmented. I was diagnosed with POTS in 2015 and this is a decent overview of symptoms as well as potential treatment plans for dysautonomia.

[vivi · Rating 3 out of 5]

another book reccommended by my pcp years ago and finally got around to reading lol. this book is great for people who have been recently diagnosed with/and or suspect autonomic dysfunction and dysautonomia disorders including but not limited to POTS. this is also a really good books for partners, parents, friends etc... its very basic information, which was kinda disappointing because i have already have done my own research, and also heard a lot of this from my doctors. i'm very fortunate to have good doctors and be aware of everything in the book, but it was a let down to already know everything.
that aside, i really liked the format and how digestible all the information in this book was. it felt clear, concise and very easy to read. i recommended this to anyone who has, or knows someone, with POTS or dysautonomia :)

[Rocky Woolery · Rating 4 out of 5]

While much of the material was very good, the way the book was put together made it a bit challenging to read. I was glad to see the patient and physician side of things covered, it was just a bit confusing at times to figure out if I needed to read the left hand pages only (for the patient) or if I needed to read both the right and left hand pages (for the patient and physician). This at times led me to try and figure out what was being said as I would naturally read from the left hand page to the right hand page.

[Christina Griner · Rating 4 out of 5]

This book is somewhat helpful, I think as of now in 2020, it's a bit outdated. I gave 4 stars for the info on what it is and what it's doing to your body and why you feel the way you do. I would love to see more about helping to deal with it, to lessen the episodes it causes. My cardiologist and I have both read the book and he was trained by one of the Dr.'s in this book and I'm still not able to have a halfway normal life.

[Leslie McKee · Rating 5 out of 5]

Such an informative book! I have highlights and sticky tabs all throughout the book. It's a wonderful resource for the newly diagnosed, as well as for their doctors and loved ones. I liked the format where it had info in layman's terms for the patient alongside more technical info for the doctors. I read both parts and learned so much. The book provides a great starting point for those new to this journey. Highly recommended!!

[Jim D'Ambrosia · Rating 4 out of 5]

Lots of good information on dysautonomia. Definitely worth reading if you're new to the subject. As others have noted, the dual format for patients/providers is distracting. You'll probably want to read both perspectives in any case. I wish the book had more to say about treatment options, but that's the fault of the disease and not the book.

If you know me and want my notes, drop me a line.

[Stacy · Rating 5 out of 5]

Well, I'm convinced from reading this book that I have a disordered autonomic nervous system, and have contacted a specialist. The book is very easy to read, covers the waterfront, as it were, about what dysautonomia is and the many ways it can manifest. Thorough but simple to understand. A great starting point. I highly recommend it for anyone who suspects this may be the reason their body doesn't function normally

[David · Rating 3 out of 5]

Informative, but not very well written. Repetitive with lots of formatting errors and the layout was funky. I ended up just reading through the full "For Patients" part as a whole, then going back and reading the "For Physicians" part, which didn't really go into as much detail as I'd have liked. But still, it was a good read for general education about dysautonomia.

[Megan · Rating 5 out of 5]

This is a great bare bones, basic information starting point for anyone who either has been diagnosed with dysautonomia or suspects they may have a form of dysautonomia. While it doesn’t delve too much into specifics, it assuages many fears and gives a wonderful basis for further research based on one’s own health concerns. I’m very glad that I read this one first in my research.

[Rebecca · Rating 4 out of 5]

This book is uniquely split into a patient self help / education manual on each left side of the page and a manual for physicians on the right side of each page that goes into further scientific detail. Super wonderful resource for anyone dealing with Dysautonomia. I enjoyed my library copy and just ordered a copy on Amazon for my husband and family to read.

[Benjamin Bookman · Rating 5 out of 5]

I read this book once through quickly and gained a ton of information. Now I am reading it again slowly to really soak in every piece of advice and guidance. I don’t know that I would ever give it to a doctor, but I feel like I learn as much from the doctor sides of each chapter as from the patient parts.

[James]

"The Dysautonomia Project" is a much needed tool for physicians, patients, or caregivers looking to arm themselves with the power of knowledge. It combines current publications from leaders in the field of autonomic disorders with explanations for doctors and patients about the signs and symptoms, which will aid in reducing the six-year lead time to diagnosis.

[Sherri · Rating 5 out of 5]

Extremely informative and great to share with your healthcare providers. A great resource for anyone suffering the symptoms of POTS/dysautonomia to learn more about this condition and in turn be able to educate your healthcare providers on one's symptoms since they can vary from person to person.

[Corrie · Rating 4 out of 5]

This wasn’t exactly new information to me, but as a whole it is a good resource for a family member or someone who would like to learn about it. The format is a little annoying to read but otherwise the content is easy to read

[Sandy Hayes · Rating 5 out of 5]

This was such an easy read for me! I love how the book was split up between information for patients and for physicians. I read some of the physicians sections but skipped the ones over my head. I was able to talk to my doctor about this and feel well informed enough to advocate for myself.

[Sarah Foster · Rating 4 out of 5]

Great information, and I love the format of dual information for patients and practitioners. Could use another run-through for grammatical errors, plus elimination of the sexism and fatphobia in the information presented.

[Kassie Cox · Rating 5 out of 5]

This book was amazing! So helpful and so informative!! I learned so much about my body/condition reading this! If you have or you know someone that has Dysautinomia (POTS being the most common one) you need to get this book!

[Kerry · Rating 3 out of 5]

It was ok as a starting point, not super groundbreaking. I found the “for patient” and “for dr” layout annoying, just split it into two. And pick a font. The categories of drugs was useful.

[Jennifer · Rating 5 out of 5]

If you have Dysautonomia or love someone who does, this book is ESSENTIAL! It's an excellent reference and an easy read. I will be sharing it with family and going back to it often.

[Kathleen Barrett · Rating 5 out of 5]

The book is very useful for someone recently diagnosed with dysautonomia and POTS, despite the formatting issues and some repetiveness.

[Meg · Rating 4 out of 5]

Really helpful and informative. Took one star off because it lists "go back to school for biological sciences" as a possible treatment plan. Um, what?

[Nicole Noelle Niehaus · Rating 5 out of 5]

Very informative, simple concise information about Dysautonmias. In particular postural orthostatic tachycardia syndrome AKA POTS!

[Charlie - disableddaydreamer | itsbarbieparis (looking for mutuals) · Rating 4 out of 5]

invaluable dysautonomia resource

[Chelsea Wells · Rating 3 out of 5]

Was hoping to learn new information

[Fonda Quick · Rating 5 out of 5]

Clear, easy read. Incredibly informative. Waiting for a much anticipated update.