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
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 it or not, diagnosed or not from what I can see. I keep finding increasing
As the current coordinator for the PNW Chapter of The Mastocytosis Society covering the greater Pacific Northwestern region of the US plus a few neighboring Canadians, I’ve been eager to help educate both patients and doctors as much as possible to this collection of diseases involving mast cell activation that goes so rarely diagnosed. Alas
This page last updated December 22, 2024, originally posted in 2017. Prior to March 15, 2017 we spoke of six main forms of EDS only, and some additional hypermobility syndromes (HMS, JHS, BJHS) which seemed to share a lot of overlap and confused everyone. These have all been folded into either the newly sharpened EDS
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
Editor’s note April 2024: I’m behind on updating all my pages to reflect the change in terminology in the mast cell disease world. Mast Cell Diseases, or just MCD (no “A”) is now the official umbrella term for all forms of mast cell diseases, including Mastocytosis (all the forms), HaTS, and MCAS among other less
It is with a VERY heavy heart that I share the sad news that my beloved and sweet therapy rattie Peanut has moved on to cross to Rainbow Bridge suddenly last Friday March 20, 2015. I was in the middle of trying to schedule surgery to remove some rapidly growing tumors she had started sporting
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.
