Author Archives: Jandroid

Seeking zebras of color

I don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost … Continue reading

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Validate Yourself

It’s March 20th, 2017, and the new extremely complex and greatly updated Ehlers-Danlos syndromes nosology and diagnostic criteria haven’t even been out for a week, and yet it feels like a month has already passed, my brain is so blown … Continue reading

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Handling Change

I’m writing this post ahead of what is likely to be a day of great change for many if not all in the greater Ehlers-Danlos community, if not the world (whether they all know it or not, smile). It is … Continue reading

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Wherefor art thou Dysautonomia?

“Homeo(stasis)… oh homeo(stasis)… wherefor out thou dysautonomia?” to mangle a phrase with apologies to all you brilliant Shakespeare scholars. And mix some medical metaphors to boot. Anyone who’s been exploring either Ehlers-Danlos Syndrome or the highly comorbid Mast Cell Activation … Continue reading

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What is Normal

I know, “what is normal” is a really loaded question or statement, but I’m not intending it to be. My normal is not yours, nor theirs, nor anyone else’s. Well truly have our own “normal”. I’m just trying to help distinguish … Continue reading

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Finding Your MCAD Triggers

As many of you know, we’re unfortunately finding Mast Cell Activation Diseases aka “MCAD” of all kinds (forms of masto or the newly recognized MCAS) to be relatively common in Ehlers-Danlos patients, which is why I’ve written about them at … Continue reading

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Think marathon… not sprint, when trying to diagnose and treat a connective tissue disorder. (Large doses of patience and persistence are in order at all times.) – Jandroid

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Reframing autism and more

I know, you came here originally to learn about a connective tissue disorder called Ehlers-Danlos Syndrome. I originally came here to write about a connective tissue disorder called Ehlers-Danlos Syndrome after experiencing a massive onset “cascade” or storm of symptoms that … Continue reading

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50,000 Shades of Grey

2017 editor’s note: I wrote this post in early 2016 a year before the new EDS nosology and diagnostic criteria were presented in March 2017, so some of the diagnostic information below is now outdated. E.g. the Brighton (with an … Continue reading

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Patience Grasshopper

Update February 7, 2017: Via The Ehlers-Danlos Society (aka “The EDS”) on Facebook the full new EDS nosology will be published on March 15, 2017. Meanwhile, some preliminary documents have been shared ahead of time, including one that talks about … Continue reading

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