Tag Archives: medical zebras

50,000 Shades of Grey

Sorry to disappoint you erotica fans, but this post is not going to be nearly as sexy as the recently viral romance novel whose title it is reminiscent of. But I hope having lured you in, it will keep your … Continue reading

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The Chronic Constellation

Fasten your seatbelts and settle in with a snack again, you’re in for another long ride, smile. (I’ll try not to make it too bumpy!) Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio … Continue reading

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Depression and EDS and MCAD

I really need to include anxiety in this post as well, as the two – depression and anxiety – seem to go very hand-in-hand for a large number of us. No surprise, this is true for the commonly comorbid autism … Continue reading

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Our Stories of Strength coming out May 2015

I’m thrilled to share that my short “story of strength” was included in the first edition anthology of Our Stories of Strength: Living With Ehlers-Danlos Syndrome that came out on Kindle May 8th, 2015 for EDS Awareness Month! And as … Continue reading

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5 Things You Should Know About Chronic Pain

I’m slowly cooking up my own “Pain and EDS” post, but meanwhile, I felt this one by fellow blogger and sufferer Zyp Czyk worth sharing sooner than later.

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You know you have EDS when…

You know you have EDS when… you injure in your sleep! – Jandroid

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Denial is not a river in Egypt

I’ve found myself saying this phrase a lot throughout my life. I first learned it in recovery circles – Adult Children of Alcoholics as a teenager, initially. Followed by Codependents Anonymous later. And more recently I’ve been saying it in regard … Continue reading

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Appearances are deceiving

Appearances are deceiving. Everyone has undoubtedly experienced some form of misunderstading, bias or disrespect from some form of misjudgement based on our appearance, sick or not. (Racism, sexism, agism). But the appearances of those with any form of Ehlers-Danlos Syndrome are especially deceiving, as … Continue reading

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But I’m a horse!

Update May 1, 2017: This post was originally written in 2014, before the brand new category of Hypermobility Spectrum Disorders was introduced by The Ehlers-Danlos Society in March 2017 for those who are “less bendy”. Thus, I will either be … Continue reading

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On Variable Expression

From the online Genetics Home Reference, variable expression is defined as: “Variation in clinical features (type and severity) of a genetic disorder between individuals with the same gene alteration, even within the same family” [italics mine, JG] Definition from: GeneReviews from … Continue reading

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