Ehlers Danlos Syndrome Awareness Month

4 May 2015

So May is Ehlers Danlos Syndrome (EDS) Awareness month so I am hoping to do a few posts this month to spread awareness. It also just so happens to be the month the world was blessed with my presence (10th May).


Ehlers Danlos Syndrome


What is EDS I hear you ask? Well EDS is the reason my fabulous body is so crappy at being a body. In simple terms EDS causes what holds my body together to fail at life. So I fall apart really easily.

The connective tissue is what gives support in skin, tendons, ligaments and bones. This is faulty in EDS hence why the condition results in such a broad spectrum of symptoms in joints, organs, skin etc. I will do another post with all the beautiful* symptoms that I am blessed with *they suck. 

Collagen is a protein found in the connective tissue which acts as a kind of glue in the body. This adds strength and elasticity. My mum describes it as building a house with porridge instead of concrete (Although that stuff is pretty damn close when it dries so I think she needs a new analogy). There are many different kinds of collagen and the type of EDS depends on which collagen is faulty. 

I have the hyper mobility type or type III which means that my joints are super bendy and don't really have a stopping point (yes I've heard all the great in bed jokes). The downside to this is that I dislocate or partially dislocate (Subluxation) on a daily/hourly basis. There is not a joint in my body that I haven't dislocated. Jaw, shoulder, elbow, wrist, fingers, ribs (Yep they can dislocate too and it hurts like a bitch), hips, knees, ankles, toes and anything else I have forgotten. It also means that because my body is having to work over time to actually keep me in one piece I hurt all over all day every day. I cant remember the last time at least one part on my body didn't hurt. This also leads to fatigue (which is more than just being tired).  I have to use a wheelchair for the majority of my walking outside, I also have crutches and a fabulous walking stick for better days but these dislocate my shoulders. I get payback after everything I do. For instance I went to Cardiff on Saturday in my wheelchair and sat night and sunday night I had to go to bed at 9pm because I was in too much pain and too exhausted for life. I'm still paying for it today. Fun fun fun. 

If there's anything in particular you want to know about my life with EDS let me know and I can do a post on it. 

If you want more info you can check out the Ehlers Danlos Support UK site and if you have any questions especially if you or a friend/family member are newly diagnosed and scared don't hesitate to drop me a message at mermaidindisguise@outlook.com or on twitter @Bendy_Mermaid

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