A Chiari Warrior’s Journey
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The Michelle Cole Story – A Chiari Warrior’s Journey [UPDATED]
As I sit down to update my journey, I am crushed that we’re still figuring things out (and nothing really was as I was initially told it would be), yet at the same time, I’m so thankful that we’re continuing to figure things out. Nobody should have to fight a fight like this (every symptom,…
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The Emmalyn Freeze Story – A Chiari Warrior’s Journey (Updated)
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in A Chiari Warrior’s Journey, Acquired Chiari Malformation, Atlantoaxial Instability, Craniocervical Instability, Dysautonomia, Ehlers-Danlos Syndromes, Heritable Disorders of Connective Tissue, Intracranial Hypertension, Intracranial Hypotension, Mast Cell Activation Syndrome, Syringomyelia, Testimonials, Tethered Cord SyndromeColton had just finished his Chiari Decompression. He was headache free and doing great! His neurosurgeon came to me and said, “This is a genetic disorder and Emmalyn should be checked.” Two weeks later I took Emmalyn into the Chicago area to be sedated for her first MRI of the brain and spine. Three hours…
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The Mukti Ryan Story – A Chiari Warrior’s Journey
“But you look so good” is what people usually say when they find out that I struggle with debilitating chronic illnesses. It is true- I wear fashionable clothes, I do my hair, I put on makeup and I have a smile on my face. Underneath it all though, is someone who is trying to live…
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![The Petra Johansson Story – A Chiari Warrior’s Journey [English Version]](https://dev.chiaribridges.org/wp-content/uploads/2019/11/Petra-Now2.jpg)
The Petra Johansson Story – A Chiari Warrior’s Journey [English Version]
“We need to perform surgery on your brain, and we need to do it now!” What would you do if someone said that to you? Your brain – that thing on the top of your head that is all that is you. Someone needs to cut into it and fix what is wrong and there…
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The Sarah Taylor Story – A Chiari Warrior’s Journey
When I first started getting hit with symptoms, I was a divorced, single mother of three amazing kids; responsible not only to provide for them but to see them through life, unscathed by life’s situations, and showing them that there was nothing that if they worked hard at something, nothing could hold them back. I…
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The Denelle Crespo Story – A Chiari Warrior’s Journey
I was what you would consider a “typical developing child” growing up, I did not have any health issues and was able to enjoy much of my childhood. My journey to finding answers in regard my health began at 15 years old, when I began rapidly losing my vision in my left eye. I dealt…
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The Majbrit Jessen Story – A Chiari Warrior’s Journey
I had a rough journey with these conditions and I am sharing it to help show how complex we can be and how much we need the medical community to step it up a notch (or ten)! I grew up in Denmark, where I lived when I was diagnosed and had my first surgeries. I…
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![The Christopher Ellington Story – A Chiari Warrior’s Journey [Updated]](https://dev.chiaribridges.org/wp-content/uploads/2017/05/hosp1.jpg)
The Christopher Ellington Story – A Chiari Warrior’s Journey [Updated]
My introduction to Chiari malformation I (CM1) begins in 1994. I had been married about 7 months and we had just celebrated our first Christmas together as newlyweds. Shortly after the new year, I developed a bad headache that eventually evolved into losing my eyesight in one eye. I went to the eye doctor, who…