Recommended Books

When to Suspect EDSUpdate September 4, 2022: obviously since the new diagnostic criteria came out in 2017, some of the older books below are technically out dated or based on older, now obsolete diagnostic information since the new nosology came out March 15, 2017.

But their symptom descriptions and management suggestions are still beneficial, even if the labels have changed. (I’ve omitted anything that could really lead you astray.)

Please note, according to The Ehlers-Danlos Society (TEDS) who appointed themselves the authority on all things EDS and Hypermobility in 2016, the former diagnoses of HMS, JHS and BJHS are all now technically obsoleted and rolled up into either the forms of EDS including hEDS, or the new forms of the new category called Hypermobility Spectrum Disorders for those who don’t quite meet the newly tightened hEDS criteria.

This is not universally accepted though, so doctors in different areas of the world may still refer to older terms and criteria either from lack of updated knowledge, or just by choice despite all of the Society’s efforts to bring everyone into this paradigm worldwide.

That said, the older books can STILL be beneficial, as long as you keep this fact in mind, and realize that even people who do not meet the newly tightened hEDS criteria may still benefit from what they contain. I.e, we’ve just changed the names and labels for what we’re still talking about, just like we did when we demoted Pluto to a dwarf planet back in 2006. It didn’t’ change a spot, and is still orbiting the sun just as it always was. We just changed our minds about what to call it, right? (I still feel it’s a full planet, dammit!)

To reiterate for those not yet aware, an entire new diagnostic category called the Hypermobility Spectrum Disorders was developed for all those with signs of hypermobility but who are not obvious or lucky enough to meet the newly tightened hEDS criteria, and don’t show signs of any of the rarer types of EDS or any other similar Connective Tissue Disorders. (Marfan Syndrome, Stickler Syndrome, Osteogenesis Imperfecta, Loeys-Dietz Syndrome. See Diagnosing EDS here for more help on that whole process.)

In other words, the forms of HSD are a diagnosis of exclusion for now. This may change. TEDS has claimed they will keep reviewing the diagnostic criteria and nosology at least every two years, instead of once in twenty as happened before. (2017 was the first update since the Villefranche nosology back in 1997.)

I’m sure more will be forthcoming. Meanwhile, I’ve just learned of several great new books to share in 2022, both technical and personal (see below). Stay tuned for more as I learn of them and slowly catch up! Finally, EDS is going slowly “viral” in the literature!

For newbies, needing the best starting points and books for diagnosing:

(Find my “Cliffs Notes” For Doctors page here to get up to speed really quickly if needed before diving into the books below, especially if you’re a doctor with a live patient in front of you.)

From the list below, I still highly recommend Dr. Brad Tinkle’s Joint Hypermobility HandbookA Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome 2010 for starters for both patients and doctors to help recognize the syndromes. I feel it does a great job of quickly addressing the myriad ways EDS/HMS/HSD etc. manifest categorized by body system. (Make sure to get the 2nd edition with the blue cover with a sunflower on it, not the 1st edition).

Even though it’s technically outdated now as far as diagnostic labels and criteria go, it’s still an excellent all-encompassing description of our most common body-wide issues and what to look for. (Akin to my “When Else to Suspect EDS” page.)

Followed by Disjointed, 2020, edited by Diana Jovin and then Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders from 2017 by Claire Smith for the latest (post 2017) technical and diagnostic information for now. (More is hatching every year for our win, finally.)

For patients I also recommend The Revised Driscoll Theory, (no affiliation) and of course, the non-technical Stories of Strength anthology I’m a part of.

Recommended Technical Books on EDS / HMS /Fibromyalgia 

Personal Stories and or Fiction involving EDS and more

Recommended Books

Coping With Chronic Pain and Illness in General

And finally, our first and best book on the state of MCAD today:

I feel it is very validating for BOTH doctors AND patients. For, while patients will see “their people” described eloquently (and with a wry wit), doctors will also feel validated for missing one of the most chameleon-like diseases ever recognized.

It mimics, masks and/or drives so many other conditions (including anemia, and high cholesterol among many others including opposing issues), it’s no wonder it’s gone unrecognized all these years. It’s a chameleon with spots!

Don’t ignore the great glossary in the back either – not nearly as dry as you might think, I’ve learned as much or more from that as I did from the case-study filled narrative. (Plus expanded my vocabulary of course.) HIGHLY RECOMMENDED!

And new in 2018: Mast Cells United – A Holistic Approach to Mast Cell Activation Syndrome 2018 Walker, Amber

Other related resources for our many comorbidities: