Friday, 16 November 2012

Hypermobile bits and pieces

Today I posted a number of pictures of my hypermobile hands on facebook and twitter. They aren't the only part of me that is hypermobile, but they are the easiest to get good photos of.

I mentioned in my first post on this blog that I have a genetic condition which affects the production of collagen in my body. I don't know which particular gene/s are affected, this would take a lot of tests and a huge amount of money. 

As a result of this condition I can do all sorts of weird 'party tricks', and it is one reason I was such a good bellydancer as a teenager. Hypermobility can be a blessing, and also a curse. Being hypermobile is not that uncommon, and many talented dancers and gymnasts find being very flexible can come in quite handy. There are, however, a number of genetic conditions which feature hypermobility as a symptom, these include Ehlers Danlos Syndrome and Sticklers Syndrome. Having one of these conditions means being at risk of more serious complications such as heart troubles, deafness, sight problems, easy bleeding/bruising, healing poorly from cuts, strange scar formation, dislocation of joints, subluxation of joints (not a full dislocation but the joint is out of its correct position), increased risk of injury, pain and muscle dysfunction. 

I am lucky, my aorta is fine, my hearing is good, and I don't have serious dislocations. Unfortunately my joints do move out of position at the flap of a butterflies wings, I heal poorly from cuts and have odd stretched out looking scars, pain and muscle dysfunction.

Most of these complaints can be managed, with splints/braces/strapping, exercises targeted to improve muscle function, pain medication, pacing of activity and avoiding things that put my joints into compromising positions, particularly repetitively. 

According to one geneticist I had a video conference with I do not fit into one particular category, but seem to have a mixture of signs and symptoms of a few collagen disorders.

I believe from my own research that I fall more closely into the category that includes Ehlers Danlos Syndrome Hypermobility Type. I am a member of the EDS australian forum where we bendy bods share information, support each other and have a good vent when things get too difficult.

If you know someone who is hypermobile, particularly a child that appears to be having trouble, read up on hypermobility syndrome and EDS. It is often not diagnosed properly, but diagnosis could save that person a lot of awkwardness and improve their quality of life.

Here are some crazy pictures of my bendy hands:

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