Closed petition Inquiry into treatment of Ehlers Danlos patients and it’s comorbidities

Closed on 6 November 2019

Ehlers-Danlos Syndromes (EDS) are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top end of a spectrum called Hypermobility Spectrum Disorder (HSD).

After being contacted by many EDS patients with tragic stories, we are calling for an independent enquiry into the treatment of EDS patients and associated comorbidities. Patients can be accused of fabricating illness and are treated as a psychiatric patient (much like fibromyalgia). For example, Antonia was an inpatient as a teen and had stays up to 3 years, including ICU. Doctors seemed unaware of EDS thus provided poor care. It appears to be common for most EDS patients. Something needs to change!