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 Monday March 13, 2017 as I type this, and we are all waiting on tenterhooks
You may have noticed I don’t give much dietary advice here. In fact, to this point, I’ve given virtually none. And this is for a very good reason: just like medications and just about everything else with Ehlers-Danlos Syndrome with a dose of Mast Cell Activation Disorder on the side (any flavor) among plenty of
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 as of 2017) and the brand new category of Hypermobility Spectrum Disorders JUST came out, please bear with me as I get my site updated to reflect this. Accordingly, please take
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 of June 1, it is now also in Print on Amazon too! It is co-edited
So you’ve finally gotten a diagnosis, and some validation (hopefully!) Now what do you do about it? Sadly, there’s no single remedy or path to recovery (at whatever level) for everyone sorry, due to the systemic nature and extremely wide variation in expression of the condition in each of us, and the myriad complicating comorbidities I keep mentioning. (For
As everyone knows we just celebrated Independence Day in the US this past week (July 4, 2014). What you may not know is that I also celebrated some personal independence that I’ve newly regained thanks to hundreds of hours of hard dedicated work in the therapy pool, my kitchen and garden, and on my bike. That is,
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
