Tag Archive: CCI

1st image is a hybrid contemporary and Renaissance-style portrait, a woman with a calm dignified expression regarding the viewer, wearing a crisp white neoprene dress and a cervical collar evoking a European ruff. The background, clouds and blue sky. In her hands, a little toy brain in an astronaut helmet.

Patient support groups helped me find care.

I was diagnosed with hypermobile EDS (hEDS) in January 2018. In October 2019, I started experiencing debilitating fatigue and neurological symptoms. Over the course of the next year, parallel to the pandemic, I went from being able to walk ten miles, to five miles, to one mile, to a quarter of a mile before I
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a selfie of paul sat on a sofa, with a bookshelf behind him

My journey with cEDS and CCI

Hi! My name is Paul and I’m in the UK. I have finally come to the realization that Ehlers-Danlos syndrome (EDS) may be behind my ‘troubles’, but more importantly in relation to Craniocervical Instability (CCI). A few facts to start with. I was, what we call over here, ‘double-jointed’, as a child mainly around the
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a selfie of andrea in a car

My journey from “mushy muscles” to misdiagnosis

I was born in the ’70s… My parents were told I was born with “mushy muscles”. I didn’t walk until I was 20 months old, but I managed and I was cute. I was the firstborn on both sides of the family, so no other babies to compare to, though little things bothered my young
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