CSF Leak

Soft sketch-style illustration of an upright MRI machine with a dark-haired patient seated inside wearing MRI-safe clothing. A female MRI technologist stands beside the machine, speaking with the patient and adjusting the controls. The image depicts a weight-bearing upright MRI in a calm clinical setting.

Seeing the Spine in Motion: Exploring the Potential Benefits of Upright MRI in EDS

This article explores whether upright MRI may be a useful tool for evaluating EDS-related spinal instability. Understanding the limitations of standard MRI and what positional imaging could offer instead, may help patients, clinicians, researchers, advocates, and healthcare providers better navigate the complex neurosurgical landscape of EDS.   Why Supine MRI May Miss the Problem Cervical […]

Pencil sketch of a woman in a T-shirt sitting in an armchair by a window, holding a mug and looking thoughtfully outside at a sunlit spring landscape. A lightweight throw blanket drapes across her lap, while a potted plant and candle sit on a small table nearby.

What’s the Point of Pursuing EDS Diagnosis?

Like many people, my hypermobile Ehlers-Danlos Syndrome (hEDS) was diagnosed after a steep and sudden decline in my health. I had been navigating fatigue, pain, and fogginess for years, but in April 2020, I became bedbound for months following an incident during a Zoom call where I began blacking out and twitching. I had been […]