Connective tissue provides a support structure for the human body. It ensures that our joints, muscles and organs remain where they should be at any given time. It also provides us with metabolic support as required.
The Ehlers Danlos Syndromes (EDS) are a group of 14 multisystemic, inherited conditions that affect connective tissue throughout the body. Most subtypes are rare, but hypermobile EDS (hEDS) alongside the related Hypermobility Spectrum Disorders (HSD) are not rare, just rarely diagnosed.
Women are more than twice as likely to be affected by hEDS/HSD than men, yet it can take up to 16 years for a diagnosis to take place. This may be because there is no conclusive genetic test available for hEDS/HSD, and the fact that new criteria are presently under discussion. Additionally, people with hEDS/HSD often report a lack of knowledge and awareness among healthcare professionals in relation to their condition. Nevertheless, recent estimates in relation to hEDS/HSD present a diagnosed prevalence rate of 1 in 500 overall. Moreover, hEDS/HSD is also thought to affect almost 1 in 20 childbearing women. hEDS and HSD require essentially the same management and are thereforeoften referred to simultaneously.
hEDS/HSD affects people in different ways, and so it is always best to explore each case individually. For some, symptoms will be mild, yet for others, symptoms may be debilitating. Commonly shared symptoms include skin hyper extensibility along with joint hypermobility and easy bruising. Other symptoms may include joint dislocations, poor healing and fatigue. Yet as connective tissues are situated throughout the body, any organ and/or bodily system can be affected.
People with hEDS/HSD know their bodies best. As such, it is important to listen, acknowledge and respond individually when providing support. Diagnosis is important and there are things that can be done to support the management of these conditions.
You can read more from our evidence-based clinical care considerations for pregnancy, birth and beyond; experiences of parents of children with hEDS/HSD; a physiotherapy case study of a hypermobile hip pre-surgery; the GP toolkit; as well as following ongoing research investigating interventions, diagnosis and underpinning mechanisms on hEDS/HSD, PoTS and related conditions. You can also find live updates from us on Twitter @hEDStogether and Instagram @hEDS_together
Follow us for the latest on hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders.