Rachel Warner Rachel’s Journey

First post: Jun 12, 2024 Latest post: Jun 12, 2024
My journey with Autoimmune Autonomic Ganglinopathy:
Back in 2020, I started developing GI issues and occasionally fainting events and this continued to worsen and become life-limiting. I was undiagnosed for many years and my past struggles with mental health made it confusing for doctors to identify the cause. I got to the point of being unable to keep down any food and losing consciousness daily. Hospital admissions, feeding tubes, central lines, and wheelchairs became my new life. It wasn’t until this past two years when I transferred my care to Stanford I finally got answers.
I have been diagnosed with Autoimmune Autonomic Ganliopathy. This means that my immune system started attacking my autonomic nervous system. They don’t know why this happened (though the stress of mental health treatment back in 2019 makes me suspicious if that was a main factor).
This mainly affects me by causing my GI system to stop moving (Gastroparesis and colonic inertia), and when I move positions my body has a hard time keeping blood in my brain which causes me to faint (Orthostatic Hypotension), and some other troubling symptoms. My neurologist is currently fighting for insurance to approve a treatment called IVIG which would stop my autoimmune system from further attacking and get me into remission. And though this condition is chronic, my doctors think IVIG will get me back to living life again.
So I’m hoping things are going to start turning corners soon here. But I know that no matter what I am grateful for the people in my life and the experiences I have shaped me into the person I am.
God is good.
And tomorrow is filled with hope 🙌
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