This petition was submitted during the 2017–2019 Conservative government
Petition Inquiry into treatment of Ehlers Danlos patients and it’s comorbidities
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!
This petition closed early because of a General Election Find out more on the Petitions Committee website