A Zebra What?
A Zebra Spoonie!
I have a connective tissue disorder known as Ehlers Danlos Syndrome. We EDSers are known as Zebras. You see, in medical school, doctors are taught to look for the most obvious answers first. "When you hear hoofbeats, think horses, not zebras."
Because some types of Ehlers Danlos are underdiagnosed and other types are rare, we are the Zebras of the medical world!
Find some basic information here:
Ehlers Danlos @ Wikipedia
The Ehlers-Danlos National Foundation
Ehlers Danlos @ NIH
Now, why a "spoonie?"
We who have invisible and chronic illnesses have inherited this moniker from Christine Miserandino. Read about her Spoon Theory HERE.
I received my official diagnosis in January of 2014, though I suffered with many symptoms since childhood. I will write about my past and present struggles with this illness on my blog. On this page, I will share information and resources as I find them. I will soon relocate from North Carolina to Oregon, and I will start a local support and physical therapy group for EDSers and those with related disabilities. I will be returning to college to study Molecular Biology. This will allow me to pursue work in genetics research. I hope to contribute to the slowly growing body of knowledge regarding Ehlers Danlos, and to make life easier for my son, who is also a Zebra Spoonie. In memory of my departed sister, I would like to one day establish a nonprofit foundation that provides college scholarships and medical funding assistance to those with Ehlers Danlos.
If you have any questions, feel free to ask!
I have a connective tissue disorder known as Ehlers Danlos Syndrome. We EDSers are known as Zebras. You see, in medical school, doctors are taught to look for the most obvious answers first. "When you hear hoofbeats, think horses, not zebras."
Because some types of Ehlers Danlos are underdiagnosed and other types are rare, we are the Zebras of the medical world!
Find some basic information here:
Ehlers Danlos @ Wikipedia
The Ehlers-Danlos National Foundation
Ehlers Danlos @ NIH
Now, why a "spoonie?"
We who have invisible and chronic illnesses have inherited this moniker from Christine Miserandino. Read about her Spoon Theory HERE.
I received my official diagnosis in January of 2014, though I suffered with many symptoms since childhood. I will write about my past and present struggles with this illness on my blog. On this page, I will share information and resources as I find them. I will soon relocate from North Carolina to Oregon, and I will start a local support and physical therapy group for EDSers and those with related disabilities. I will be returning to college to study Molecular Biology. This will allow me to pursue work in genetics research. I hope to contribute to the slowly growing body of knowledge regarding Ehlers Danlos, and to make life easier for my son, who is also a Zebra Spoonie. In memory of my departed sister, I would like to one day establish a nonprofit foundation that provides college scholarships and medical funding assistance to those with Ehlers Danlos.
If you have any questions, feel free to ask!
