Empowering patient research

'One of us – Joanne Hunt (Jo) – has been largely confined to the house for more than a decade, sometimes bedbound for weeks or months at a time. Jo’s primary diagnoses, hypermobile Ehlers-Danlos syndrome (hEDS) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mean that her daily activities are severely restricted.

Jo had to wait more than 30 years for a diagnosis of hEDS, characterised by joint instability, hypermobility and chronic pain. Most clinicians still struggle to know how to treat it, and the burden has been on Jo to learn about, and figure out, how to manage that condition, which is considered the most commonly occurring variant of EDS, a group of rare inherited conditions.

One of the roadblocks to Jo’s treatment was lack of knowledge among clinicians, creating a devastating obstruction to care – often a problem for patients with rare conditions like EDS. When providers and researchers are able-bodied while patients are disabled, the chasm in lived experience, motivation and immersion in every last nuance of a condition can often be vast.'

aeon.co/.../we-need-the-first-hand-experience-of-disabled-researchers