Friday, 8 May 2015

EDS Awareness Month

As many of my followers know, I live with Joint Hypermobility Syndrome, or Ehlers-Danlos Syndrome (hypermobility type). As many as 1 in 20 people have some form of hypermobility - if you were double-jointed as a child, or you used to be really good at ballet or gymnastics, that's you - but for a minority of us, this becomes a disabling illness later on in life. The laxity of our joints leads to frequent dislocations (or partial dislocations, known as subluxations), near constant muscle pain, low energy, and fatigue. Many of us need to walk using a stick or crutches, or to use a wheelchair all or part of the time.

EDS is primarily a disorder of the collagen, meaning that it can also affect the digestive, circulatory, urinary, and autonomic nervous systems. This produces a laundry list of painful and debilitating symptoms and partner illnesses. EDS has also been linked to dyspraxia and a number of autistic spectrum conditions, as well as fibromyalgia and chronic fatigue syndrome. Between the pain, the frustration, and the stigma we face as people with visible or invisible disabilities, many of us also live with mood disorders or other forms of mental illness.

May is EDS Awareness Month, so I'll be making an effort to revive this blog to talk a little about it. I write this post just after a UK general election where the Conservative Party - who have made no secret of their contempt and hostility towards people with disabilities - have won a parliamentary majority. I write in the face of fear and dread for the future, knowing that many people out there would gloat at the discomfort, disbelief, pain and stigma I, along with hundreds of thousands of others like me, face on a daily basis. But these words on this page are one of the few ways I can fight ignorance and prejudice, and maybe a few people will read them and take them to heart. So here we are.

Welcome, friends. It's going to be a bumpy ride, so get as comfortable as you can.

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