Invisible Disabilities: Ehlers Danlos Syndrome

 Hypermobility Syndrome/ Ehlers Danlos Syndrome
Jan 242012
 

How many of you have heard of Ehlers Danlos Syndrome? My guess is not many. I hadn’t until I was diagnosed with the hypermobility form of it in the summer of 2010 at the age of 16. After 9 years of aching pain in my legs and joints, endless fatigue and misdiagnosis including Osgood Schlatters, shin splints, ‘growing pains’ and sporting injuries, I finally got the correct diagnosis when I was referred to a professor  at UCHL in London.

But what actually is EDS? Well I’m no expert and there are at least six different forms of EDS of which I have type 3 – the hypermobility form. Click here for more

Hypermobility Syndrome – getting diagnosed – getting treated – tell your story!

 Hypermobility Syndrome/ Ehlers Danlos Syndrome
Jan 092012
 

At the beginning of 2012 we asked our readers to suggest any topics they felt would be suitable subjects for discussion blogs here at The Patient Experience.  Lisa felt it would be useful if we ran a discussion blog on Hyper-mobility Syndrome (HMS).  She has had HMS for eighteen years but only got diagnosed when she was pregnant.  She feels that the specialists at her local hospital cannot offer her effective treatment and that physiotherapy makes her condition worse.  This hypermobility blog will, hopefully, give Lisa and her fellow hypermobility patients an opportunity to share their stories and learn from each other.

Hypermobility is a condition where a persons joints stretch further than they should.   It is often also, incorrectly referred to as being double jointed.  Some hypermobile people can appear to be contortionist.  The syndrome is where it is married with other conditions such as myalgia and arthralgia.Click here for more

© 2012 The Patient Experience Suffusion theme by Sayontan Sinha
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