Ehlers-Danlos Syndrome: More than “just loose joints”

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I have been working with people with Ehlers-Danlos Syndrome (EDS) since 2008, and it has become apparent to me that for most of my patients this condition is so much more complicated than just unstable joints. During a medical conference in 2022, Dr. Andrew Maxwell mentioned “The Pentad Super-Syndrome”.

The “Pentad” refers to the following combination of conditions: Hypermobile EDS, Dysautonomia (fight or flight response), Mast Cell Activation Syndrome (allergic reactions), Autoimmunity (inflammation), and Gastroparesis (stomach and toileting challenges).

These five conditions all interact with each other. For example, your mast cells may react if you are allergic to something; this reaction results in the release of chemicals from the mast cells which trigger dysautonomia; dysautonomia then impairs your ability to get deep restful sleep; impaired sleep then inhibits your brain’s ability to regulate pain; inhibited pain regulation then increase pain throughout your body; pain throughout your body then… You get the picture. One of my patients aptly referred to her pentad experience as “a body in crisis”.

Although the pentad definition only states hypermobile EDS, many of my Hypermobile Spectrum Disorder (HSD) patients also present with this same combination of conditions.

Most of my patients find this information validating. However, they then feel overwhelmed by the complexity of the situation – and rightfully so. With all these variables it can be difficult to know where to start. The best medical approach I have seen used to try and make sense of one’s pentad and pentad triggers, is “Dispositionalism”. The medical researchers behind the Dispositinalism approach have made their book freely available online (https://link.springer.com/book/10.1007/978-3-030-41239-5#about). The book was written for clinicians and can be a bit wordy, so I recommend you start with chapter seven that was written by a patient applying this approach to her medical condition.

In addition to reading chapter seven, I encourage you to watch the Ehlers-Danlos Society 2022 Global Learning Conference lectures on YouTube to better understand how the pentad can affect your symptoms.

To finish on an optimistic note: many of my patients have reported periods in their life of very minimal symptoms, so it is possible for people with EDS/HSD to emerge from “bodily crisis”; it is not a life sentence.

References:

Australian POTS Foundation. (October 2022). POTS Unmasked. https://potsfoundation.org.au/conference/

Anjum, Rani Lill & Copeland, Samantha & Rocca, Elena. (2020). Rethinking Causality, Complexity and Evidence for the Unique Patient A CauseHealth Resource for Healthcare Professionals and the Clinical Encounter: A CauseHealth Resource for Healthcare Professionals and the Clinical Encounter. 10.1007/978-3-030-41239-5.

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