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 it or not, diagnosed or not from what I can see. I keep finding increasing

Introduction to MCAD June 2015

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

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 bear with me as I get my site updated to reflect this. Accordingly, please take

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 of June 1, it is now also in Print on Amazon too! It is co-edited

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 to get a post out on time for the occasion, I was made privy to

Peanut Takes Her Last Nap March 2015

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

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 and seeking out a diagnosis finally, yay. I see increasing numbers of media stories, both