Allie's EDS/Chiari Misadventure

What is Ehlers-Danlos?
Ehlers-Danlos Syndrome is a connective tissue disorder passed down genetically through your family blood line.  In my super special case, and like many others, there has been no history of EDS in my family until myself, and it appears I have my condition because of my father's exposure to Agent Orange in 1970/71.  Ehlers-Danlos and many other disorders can be the product of Genetic Mutation which occured because of the poison Dioxin, which was found is obscene quantities being sprayed by the US Government (produced by Monsanto) over Vietnam to destroy the local jungle and foliage for easier war-action.  Ehlers-Danlos (EDS) causes chronic joint hypermobility, skin laxity, arterial weakness and more.  It can be life threatening not just because of the Vascular Type, but also because the constant and chronic joint hypermobility often means there is major instablity in the spine, and without proper care in the right time frame, a person with neck instability could die because of complications with their Autonomic Functions, and possible closing and pinching of the main artery going into your skull - which prolonged pinching can cause a stroke; all due to the neck instability. Many of us have other conditions which manifest because of EDS, such as Chiari Malformation, Tethered Cord, Postural Orthostatic Tachycardia Syndrome (POTS), Occult Thoracic Outlet Syndrome, and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS).



My Stretchy, Bendy Self

My specific EDS Journey has slowly become a story I keep hearing repeats of.  How many times have I heard a doctor say "I don't know why you're here, I can't help you" without even doing an exam.  I'm not the only one who suffers from Health Care Neglect.  There are thousands of us (if not hundreds of thousands) being led on a wobbly path where we're expected to help ourselves, and yet critisized constantly for not being able to take normal American-Medically acceptable steps to get help.  When you have EDS, Chiari, or any Invisible Disability, just getting a doc to listen is hell.  Finding someone to perform the life and Quality of Life saving surgeries we desperately need, who is experienced, is even harder.  This journey is not at all an easy one.  We do our very best. 

I personally suffer from these currently known issues:
Ehler-Danlos Syndrome 
Sjogren's Syndrome
Chiari Malformation, Occult
Tethered Cord, Occult
POTS
Cervical and Lumbar Instability (AAI and CCI)
Shallow Joints resulting in chronic body-wide dislocations
PANDAS
Mast Cell Disease
Fibromyalgia