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
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
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
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
So happy to share that the New Driscoll Theory is now available in time for Christmas! Get your copy now! Written by fellow patient and therapeutic optometrist Dr. Diana Driscoll, it addresses the latest research and understanding on what drives so many of our issues and conditions with Ehlers-Danlos Syndrome and POTS and MCAD. Yay
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
Alice in Wonderland doesn’t hold a candle to me – or anyone else with Ehlers-Danlos Syndome of any kind, I’d say. As long, winding and mind-bending as her journey down her rabbit-hole seemed, the journey of an EDS patient has an unending supply of twists and turns that would make even the Cheshire Cat blush.
