Ehlers-Danlos Syndrome
and Hypermobility Spectrum Disorder
Ehlers-Danlos Syndrome (EDS) is a group of 13 genetic disorders in which connective tissue is abnormal.
This results in abnormally fragile and hyper-extensible tissues throughout the body, which can lead to a range of debilitating symptoms.
The effect on the body is widespread and not limited to one body system as connective tissue is everywhere. 12 types of EDS are rare, the 13th type Hypermobile EDS (hEDS) is more common just rarely diagnosed. It can be managed in the same way as hypermobility spectrum disorder (HSD).
EDS and HSD are complicated conditions with many co-morbidities, including pain, gut issues, fatigue, cardiovascular autonomic dysfunction (PoTS and low blood pressure), mast cell issues, musculoskeletal matters and head and neck issues.
EDS and HSD can lead to physical disability, reduced quality of life andsome rarer types can be life-limiting.
Ehlers-Danlos Support UK
The Ehlers-Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes. Almost 40 years later, we are the largest UK charity that exclusively represents and supports people with all types of EDS and HSD.
We work to minimise the impact of EDS and HSD by making its diagnosis, treatment, and management accessible. We provide support through local physical and virtual support groups led by trained volunteers and via our freephone adviceline.
We maintain a website, issue regular newsletters, and publish materials to inform the EDS and HSD community, those with a specialist interest in the condition, and the wider public. We engage with members of local and national public policy communities to achieve systemic change.