Update December 1, 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 invented 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, in 2017 an entire new diagnostic category called the Hypermobility Spectrum Disorders (HSD) was developed for all those with signs of hypermobility and body wide trouble and pain, 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 Handbook – A 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, which is a small synopsis of all the ways we can be affected.)
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.
Update 12/1/22: I’m now signed on with Jessica Kingsley Publishers as a co-author of an upcoming book about the co-occurrence of autism and EDS. I will just have a chapter, among many other amazing authors and chapters on the matter and how both conditions can go so undetected for so long. This, even as I am still (really!) working on my own book. I’ve just been stuck madly trying not to become homeless the last five years, which has been a bit all consuming. I welcome your support here at any level thanks.
And my fellow EDSer and journalist Karina Sturm has just co-authored the first German book on EDS Ratgeber Ehlers-Danlos Syndrome (2022) with a couple of doctors available here on Springer or here on German Amazon.
Recommended Technical Books on EDS / HMS /Fibromyalgia
- Transforming Ehlers-Danlos Syndrome: A Global Vision of the Disease – Daens, Stephane et al 2022
- Disjointed – Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders 2020, edited by Diana Jovin, Hidden Stripes Publications, Inc. San Francisco, 2020
- Hypermobility Without Tears – Moving Pain-Free with Hypermobility and EDS, 2019 Di Bon, Jeanne
- Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders 2017 Claire Smith, UK NEW, post nosology update 2017 <—————————————
- ———The following books all pre-date the new 2017 Nosology and Diagnostic Criteria, NB:
- Joint Hypermobility Handbook- A Guide… – Dr. Brad Tinkle, 2010 (2nd edition, blue cover) OLDER (pre-nosology release, but still highly informative)
- Hypermobility, Fibromyalgia and Chronic Pain, 1e – Hakim, Keer and Grahame, 2010 (more technical, intended for doctors, but patients can and should still check it out too IMHO, this book helped me get diagnosed in 2010.)
- A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome – Isobel Knight 2013
- A Guide to Living with Ehlers-Danlos Syndrome – Hypermobility Type – Bending without Breaking 2nd edition- Isobel Knight, Revised 2015
- Hypermobility Syndrome: Diagnosis and Management for Physiotherapists, 1e – Keer & Grahame, 2003
- The Revised Driscoll Theory – Dr. Diana Driscoll, 2014 pdf (all proceeds benefit EDS research)
- Living Life to the Fullest with Ehlers-Danlos Syndrome: A Guide to Living A Better Quality of Life While Having EDS – Kevin Muldowney, PT NEW July 2015
Personal Stories and or Fiction involving EDS and more
- The Invisible Kingdom -2022 Megan O’Rourke on how so many conditions are missed so easily
- Holding It All Together When You’re Hypermobile: Achieve a Better Life Experience with EDS, POTS, and Joint Instability Paperback – July 29, 2022 Christie Cox
- “Fight + Flight” 2022 Machias, Jules, book for Middle Grades (ages 8-12) featuring a young non-binary student with EDS
- Odd Girl Out 2018 Laura James, an autistic woman with EDS on her discovery journey
- Journey to Health: A Holistic Approach to Ehlers-Danlos Syndrome – Mysti Reutlinger (patient) 2014
- Our Stories of Strength: Living With Ehlers-Danlos Syndrome – Reutlinger, Myles, Francomano et al, May 2015 (Includes a short story submitted by yours truly in the first edition out May 2015.)
- Power over POTS – Sheldon Kress, MD (just learned about this in July 2018, unsure what year)
- POTS – Together We Stand: Riding the Waves of Dysautonomia – Jodi Epstein Rhum
- New coloring book aims to raise awareness of EDS – Feb 2023
Coping With Chronic Pain and Illness in General
- Validate Your Pain! Exposing the Chronic Pain Cover-Up – Chino, Allan, PhD, and Davis, Carol MD 3rd edition from AuthorHouse publishers
- Explain Pain Butler, et al (NOI Group)
- How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers – Bernhard & Boorstein
- How to Live Well with Chronic Pain and Illness – Toni Bernhard 2015
- When Things Fall Apart: Heart-Advice for Difficult Times (Shambala Classics) – Pema Chodron
- Coping with Chronic Illness – H. Norman Wright, Lynn Ellis 2010
- Finding Heart Horse – A Memoire of Survival – Claire Hitchon (late mastocytosis patient and friend)
- This isn’t a book, but I just found this video SO calming I just had to share it: The Great Bell Chant read by Thich Nath Hanh
And finally, our first and best book on the state of MCAD today:
- Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity – Afrin, L. MD 2016 Amazon
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
Last updated February 22, 2023
Other related resources for our many comorbidities: