Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

August 26, 2015

Study: Perspectives of Patients and Health Professionals on Physiotherapy in JHS

Physiotherapy management of joint hypermobility syndrome - a focus group study of patient and health professional perspectives

This paper by S. Palmer et al, UK, explores the views and experiences of patient and health professional on physiotherapy in the management of joint hypermobility syndrome (JHS).

It has some enlightening insights for health professionals unfamiliar with JHS:
“I work in a rheumatology department who don’t recognise joint hypermobility as an entity and in fact, probably a lot of people tend to get diagnosed with things like fibromyalgia more than normal” [Female health professional E, 30 years post qualification, FG3]
And also some insights for health professionals treating JHS:
One patient described a rheumatologist who said, “in his opinion, his professional opinion, that hypermobility doesn’t cause pain” [Female patient C, age 53, FG2]. JHS trained health professionals felt that they were required to “undo misconceptions, other health professionals’ understanding and what they have taught or implied to the patient about their condition. So for us we sort of have to unravel an onion so to speak, and it’s quite hard, yeah challenging I think” [Female health professional E, >20 years post qualification, FG4].
Patients felt that JHS does not generally fit with health professionals’ models of acute injury and recovery and that this may be a source of frustration for health professionals. “[physiotherapists] get frustrated because their model of physiotherapy and what they’re taught and how joints move and how they get better, hypermobility is totally the opposite of what they’re expecting and they can’t understand that. I’ve had physios before say ‘well stop the shoulder dislocating’” [Female patient B, age 32, FG1]. 
Reference: Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J, Physiotherapy management of joint hypermobility syndrome - a focus group study of patient and health professional perspectives, Physiotherapy (2015), http://dx.doi.org/10.1016/j.physio.2015.05.001

August 05, 2015

Travelling with H-EDS/JHS (and many other chronic illnesses)

Blog Break
I am traveling now, and travels are always a difficult time for people with chronic diseases and disabilities, visible or invisible. I wanted to share what traveling entails for me.