Tag Archives: medicine

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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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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Heads up change is coming May 2016

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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Birds of a Feather

Birds of a feather flock together. And although we like to call ourselves medical “zebras”, for the purposes of this discussion I’m calling us birds to honor the age-old adage. Because we definitely flock and hang together whether we realize … Continue reading

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When Else to Suspect Ehlers-Danlos Syndrome

Author’s note March 16, 2017: Since the brand new updated criteria and nosology for all forms of the now plural Ehlers-Danlos Syndromes (13 of them) and the brand new category of Hypermobility Spectrum Disorders JUST came out 24 hours ago, please … 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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MCAD linked to Autism Spectrum April 2015

I’m late to the World Autism Awareness Day party which was yesterday, April 2, 2015 as I type this. (Though not late for Autism Awareness Month, which is April, by the way.) But… the good news is, while I failed … Continue reading

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Calling All Geneticists

Wow, who would have thunk it? Careful what you ask for –  you may get it: we seem to be raising enough collective awareness finally through regular and social media that more people are suspecting they may have Ehlers-Danlos Syndrome … Continue reading

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Flares happen

This post is brought to you by Peanut, my faithful therapy rattie and napping partner as I find myself going splat a lot more with my 2nd worst flare since my initial 2012 onset “storm” or “cascade” that first got … Continue reading

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Your Pain is Your Fault: What Women Are Told by Their Doctors

Sadly all too true, too many women are dismissed as either “just depressed” or histrionic despite being in very real pain. (Much of it invisible on scans in those with Ehlers-Danlos). See the shocking results of a National Pain Report … Continue reading

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