Posted in Archive, May 2016

Living with Ehlers-Danlos Syndrome Type 3

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I don’t talk about my EDS much, though it’s a painful condition it’s symptoms are by far less noticeable than my Dystonia. This has resulted in me being more than happy to allow it to simmer away in the background. Often people think that the condition means I’m simply just ‘a bit bendy’. The reality is slightly more complicated.

EDS Type Three affects multiple parts of the body. In my case my skin is stretchy but tears and bruises very easily, I have multiple allergies, sublux and dislocate at the slightest thing and have chronic pain. When I talk about my subluxations and dislocations people often presume that I have to have fallen over, or injured myself in some way to cause it. This is not the case; this week I woke up on Wednesday morning to discover I had dislocated my thumb in my sleep. I laughed so much at this because it is frankly a ridiculous situation to find yourself in.

Whilst the EDS and Dystonia are two separate conditions they impact each other. My jaw spasms will often result in a dislocation, this happens more and more frequently. Previously the two conditions acting up at the same time would have been enough to set a seizure off. It’s a worry I have in the back of my mind frequently, there is always a chance that the next dislocation will result in me seizing in an ambulance. However, despite a recent increase in dislocations I am currently just coming up to six months’ seizure free; which has me thrilled to bits.

Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

One thought on “Living with Ehlers-Danlos Syndrome Type 3

  1. I believe my daughter’s dystonia to be caused by EDS – she has other neuro problems secondary to EDS like Chiari, craniocervical instability, etc. I know of others who have found relief from their dystonia symptoms with decompression and fusion surgery… my dd is a candidate but holding off on surgery for now. We’re trying to get a handle on the dystonia which reared its ugly head last year and stave off all the other lovely symptoms like POTS, MCAD, etc. You and my dd sound like two peas in a pod (she’s 17). EDS and dystonia are both are horrid afflictions! ps – I love your blog, thank you for sharing all your ups and downs as a young person with dystonia, you are a blessing.

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