About fifteen people gathered together at Starbucks who all live with Hypermobility Syndrome. First photo is me (Tabi) with Tabi! Then there is Hannah from Cambridge, Betty from Cambridge, Addz (who is a free runner and 'anything dangerous' who is the partner of Jo and does not have HMS) and there's Tabi again posing in her new glovey things to hide her splints. Then there is Tabi glamming it up. We all have different degrees of HMS and showed off a few party pieces to each other. I turned my foot all the way round so it points backwards, Tabi dislocated her neck, Jo bent herself in half and dislocated her hips. Of course, we don't do these things because we enjoy it, just as an
illustration to each other. These dislocations can be extremely painful and pain is one of the things that is most difficult to deal with. We've all been put on various forms of painkillers - none of which have worked so we have all found different ways of dealing with our pain.
For instance, I snowboard and do anything reckless or stupid (concentration), Jo does gymnastics and free running, Tabi climbs over fences to do Urban Exploration, Hannah studies at Art College and expresses her pain through her work. All of us have other conditions such as ME, Lupus which complicates treatment.
Jo is going to endure an operation when her pelvis and hips will be smashed to pieces and replaced by new technology.
It is a difficult Syndrome to diagnose as it mimics other syndromes such as fibromyalgia and it usually the top end rheumatologists who diagnose it.
You are born with it ... lots of people are hypermobile but when it becomes a syndrome that's when the problems start.
My left knee tends to dislocate without warning, so walking down the street is just as dangerous as snowboarding down a black slope because it could dislocate whilst crossing the road, my wrists dislocate
quite easily and my jaw - so going to the dentist is always an adventure and I take hubbie with me just in case so he can put my jaw back into place!Later on this year Tabi, me, Jo and Addz are going to abseil down the maternity unit wall at Ipswich Hospital so I will be looking to you for sponsorship!
Connective tissue proteins such as collagen give the body its intrinsic toughness. When they are differently formed, the results are mainly felt in the "moving parts" - the joints, muscles, tendons, ligaments - which are laxer and more fragile than is the case for most people. The result is joint laxity with hypermobility and with it comes vulnerability to the effects of injury. The Hypermobility Syndrome is said to exist when symptoms are produced, a state of affairs that may affect only a minority of hypermobile people. It is probably more correct to refer to Hypermobility Syndromes (in the plural) as a family of related genetically-based conditions which differ not only in the particular protein affected, but also in the degree of difference of formation. Thus at one end of the spectrum are the diseases with the potentially serious complications such as Marfan Syndrome or Ehlers-Danlos Syndrome Vascular Type (formally EDS IV). At the other end are what is now called on good evidence Benign Joint Hypermobility Syndrome (BJHS) and Ehlers-Danlos Hypermobile Type (formerly EDS III), which may be one and the same. These may cause troublesome and persistent problems, but do not affect the vital organs and thus do not pose a serious threat to life. Although there is still much to learn, understanding of these conditions is advancing and the knowledge gained can help people deal with the various aspects. | |
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