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 and seeking out a diagnosis finally, yay. I see increasing numbers of media stories, both
Those who have any form of Ehlers-Danlos Syndrome (EDS) like me (with hEDS) or the new diagnosis of Hypermobility Spectrum Disorder (since March 2017) can tell you there is definitely some fatigue involved from the strain on weak muscles, torn tendons and ligaments and all forms of our connective tissue. Those of us with the very
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 me diagnosed with Hypermobile type Ehlers-Danlos Syndrome. I’m strongly suspecting a hormonal cause to this
January is Thyroid Awareness month, and I bring this to your attention at this time because a majority of the patietns I’ve met in person with any form of the Ehlers-Danlos Syndromes (or Hypermobility Spectrum Disorders since 2017) seems to also show signs of SOME form of thyroid imbalance. But quite frequently hypothyroidism or under-active
I’m borrowing liberally from Charles Dickens’ A Christmas Carol for this post. This December 2014 I’m thrilled to find myself ever so slowly climbing back out of the hole I fell in when a metaphorical “bomb” went off in my life three years ago and I succumbed to my Ehlers-Danlos Syndrome onset cascade in early 2012 leaving me wheelchair bound
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 survey. Surely we can do better!
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 to the medical world’s inability to see and diagnose a form of Ehlers-Danlos Syndrome when
Every chronic illness and issue has an awareness month, and May happens to be the month for Ehlers-Danlos Syndromes Awareness. So prepare to be beat about the ears and eyes with lots of awareness tweets, pins and Facebook posts by your afflicted friends or family. However, THIS year (I’m updating this in April 2017 after
Boy is this a hot topic! Naturally, since it’s so hard to even get a doctor or doctors to listen to us and recognize our vast collections of symptoms (see last) as a possible systemic condition, we naturally want an easy test to take and be done with this painful journey and have an answer. (Our
