Holistic Health and hEDS
resources & thought-provoking ideas for flexible folk
Tag: Ehlers Danlos syndromes
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Healed vs. Cured: A Not-So-Simple Life
***** Nothing is ever simple when it comes to complex chronic conditions like hypermobile Ehlers-Danlos syndrome, especially when the common comorbids–MCAS, and/or POTS–are also muddying the water. From managing your range of symptoms to trying to get a diagnosis (if you want one) to trying to put together a program to manage your condition(s),…
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AI Slop in Chronic Illness Online Spaces: Some Thoughts
AI slop has come for the chronic illness online community. Unsurprisingly, it’s derivative and easy to identify. What is surprising? It truly is stunning how quickly AI has wedged its way into chronic illness online spaces. These online communities to date have been meaningful and valuable. That is all changing, and not for the…
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Acupuncture and Hypermobile Ehlers-Danlos Syndrome (Some Thoughts)
Have you ever had someone say something obnoxious to you and you, instead of coming back with a clever riposte, just sit there like a turnip? Then, later, all the smart remarks you could have made come to you but it’s too late. The person has moved on with their life and probably doesn’t…
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Spleen, East and West (And Why it Matters When You Have Hypermobile Ehlers-Danlos Syndrome)
The spleen is a little guy, only about the size of a fist or an avocado. As far as biomedicine is concerned, it’s not a vital organ necessary for survival and can be removed if there are problems. Chinese medicine does not see things this way. We are big fans of the Spleen (as…
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Ehlers-Danlos Syndromes and Autoimmune Disease
Can you have EDS and an autoimmune disease? Both at the same time? Does a bear leave bowel movements in the woods? Yes. And yes, you most certainly can have EDS and an autoimmune disease. EDS is a gift that just keeps on giving, and for some of us, that means both an HCTD…
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Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria)
There are rumblings in the Ehlers-Danlos syndromes community. Change is coming. Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December of 2026. This also includes shifts to how hypermobility spectrum disorder (HSD) and hEDS are assessed and categorized. Early in 2027, the EDS Society’s update will be…
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Living With the Seasons According to Chinese Medicine: The MCAS & EDS Version (Are You Ready For Spring?)
Most of the posts on this blog start with hEDS as the baseline and expand outward to include MCAS and/or dysautonomia. In this one, I’m centering MCAS. Spring season brings its challenges for everyone, but when you’re a mastie? Spring can be particularly and specifically extra difficult for those of us with MCAS. This…
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The Empyrean and The Poppy War Trilogy (Some Thoughts on Dragons, Hypermobility, and War)
Did you expect to feel moved when you read The Empyrean series by Rebecca Yarros only to find that the main character, one Violet Sorrengail, lives with her book world’s version of hypermobile Ehlers-Danlos syndrome? Would you be more interested in Rin, the protagonist of The Poppy Wars series if you discovered that she,…
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Dysmotility, Anyone? (Gastroparesis & hEDS)
The word paresis is of Greek origin and it indicates letting go of or weakening or slackness of muscle. It refers to partial paralysis rather than a complete stopping of movement (paralysis). When this word describes what’s going on with a person’s digestive system, it is a problem indeed. Gastroparesis (delayed stomach emptying)…
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The Languages of Ehlers-Danlos Syndromes, MCAS, and POTS: Words Count
How do you articulate your experience? Yes, this is a loaded question. If you read it and thought of your joints, your articulations, then you read it just fine. If you went to the implication of verbalizing, you are also correct. Even so, for the purposes of this blog post, I will focus…
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