Welcome to the Nerdy Zebra!
I spent most of my life being told that my systemic health problems were all in my head (mostly by my family, but my pediatrician never figured anything out and just assumed everything was allergies and depression).... so now that I finally have some diagnosises, and knowledge of Google Scholar and Sci-Hub, I spend a lot of my time learning everything I can about the conditions that I have.
My current diagnosises include Ehlers-Danlos Syndrome (waiting for a genetics appointment to test for Classical type), Mast Cell Activation Syndrome, Exercise-Induced Anaphalaxis (self-diagnosed, bc it happens, and there aren't any EIAn specialists available to witness and acknowledge it, though that doesn't change the fact that it happens), Neurocardiogenic Syncope & POTS (dysautonomia), Interstitial Cystitis, Vocal Cord Dysfunction, IBS, Autism Spectrum Disorder, ADHD and more. The thing is... is these are all VERY common together. I can point to any of my friends with EDS or MCAS, and they will have a bunch, if not most of these (plus others I don't have, like gastroparesis).
I am very curious by nature. I like finding the patterns in things, and how stuff fits together. So, my own health (and now also that of so many friends I've made through these support groups/online communities) is, unsurprisingly, a major (special) interest of mine. I want to learn everything I can about these conditions, and I want to learn how and why they so frequently come in a batch in folks, especially women, like myself! Especially with the research on most these conditions (with their current diagnostic criteria) being fairly new, I find it exciting to keep up on what all is going on, and frustrating to find the gaps in our knowledge!
Like a good little nerdy autist, I have actually made my own database where I keep track of the research I read... but I keep finding so many interesting articles, I realized I needed a public place to share them with folks! And thus, Nerdy Zebra was born.
(Oh, and why a zebra? It's the symbol of the Ehlers-Danlos Syndromes. As explained on the EDS Support UK site:
My current diagnosises include Ehlers-Danlos Syndrome (waiting for a genetics appointment to test for Classical type), Mast Cell Activation Syndrome, Exercise-Induced Anaphalaxis (self-diagnosed, bc it happens, and there aren't any EIAn specialists available to witness and acknowledge it, though that doesn't change the fact that it happens), Neurocardiogenic Syncope & POTS (dysautonomia), Interstitial Cystitis, Vocal Cord Dysfunction, IBS, Autism Spectrum Disorder, ADHD and more. The thing is... is these are all VERY common together. I can point to any of my friends with EDS or MCAS, and they will have a bunch, if not most of these (plus others I don't have, like gastroparesis).
I am very curious by nature. I like finding the patterns in things, and how stuff fits together. So, my own health (and now also that of so many friends I've made through these support groups/online communities) is, unsurprisingly, a major (special) interest of mine. I want to learn everything I can about these conditions, and I want to learn how and why they so frequently come in a batch in folks, especially women, like myself! Especially with the research on most these conditions (with their current diagnostic criteria) being fairly new, I find it exciting to keep up on what all is going on, and frustrating to find the gaps in our knowledge!
Like a good little nerdy autist, I have actually made my own database where I keep track of the research I read... but I keep finding so many interesting articles, I realized I needed a public place to share them with folks! And thus, Nerdy Zebra was born.
(Oh, and why a zebra? It's the symbol of the Ehlers-Danlos Syndromes. As explained on the EDS Support UK site:
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.
