Ehlers-Danlos Syndrome - A Mini Guide

Ehlers-Danlos Syndrome - Sorry, Did You Sneeze? 

You may have seen mention on my blog of Ehlers-Danlos Syndrome, or EDS. I've had a lot of people try to "bless me" when I say it, like I've sneezed on them. So I think it may be best to have a page explaining it, so you don't think I've sneezed all over you from behind my laptop screen! 

Ehlers-Danlos Syndrome is a connective tissue disorder. It is caused by a defect in collagen (the stuff that people seem to want to inject into themselves - whatever floats your boat I guess?!). It is genetic, and incurable. 

There are several different types of EDS, and my type is Hypermobility EDS. I have some crossover with Classical EDS, but not enough to be fully classified under that type. Hypermobility is something you see in Gymnasts, Contortionists, Ballet Dancers - but the majority of these have achieved their hypermobility through their training. I was born with it, and sadly have no control over it. This means I dislocate my joints often, and with very little reason for it to happen - for example, I dislocated my ankle and gained a severe ligament sprain from getting out of a 4x4. When people hear dislocation, they automatically assume EDS is a bone problem. It really really isn't. My muscles, ligaments and tendons are the problem. I am susceptible to sprains, tears and ruptures - again with very little reason. My wrists are so hypermobile that there is a bone misaligned almost constantly. I lose count of  how many times I reset them per day, but it is into the hundreds. 

Since February this year, I have been very unwell as a result of a vertebra subluxing (partially dislocating) in my spine. I was taken to hospital and checked for any misalignment, and sent home after an overnight stay showed nothing was wrong. It wasn't until the next day that I realised I had no sensation of needing the toilet, and that I had lost a large proportion of the feeling in my legs. I was taken to hospital as an emergency with suspected Cauda-Equina Syndrome, but thankfully this was ruled out. I stayed in hospital for a week to try and get the pain under control, and then saw the Spinal Diagnostic team. After another round of MRI scans, it has been decided that my nerves are damaged, and I am now waiting to see a neurologist. 

Along with my back problems, I have an ankle which will not support my weight. I underwent surgery last year, but it has not rectified the problem. So I am a thorough mess at the moment! 

Sadly, Hypermobility and the party tricks are not always as fun as they look. But there is always somebody worse off than me. And so I am thankful. 

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