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What is this EDS?

Updated: Sep 21, 2019

As with any acronym in medicine, it has many meanings. In my field of study, it means Excessive Daytime Sleepiness, but for my body, it means Ehlers-Danlos Syndrome.

Ehlers-Danlos is a group of connective tissue disorders (about 14 now I believe) and I have what is called the Hypermobile type. What this means for me is my joints are hypermobile and many are becoming unstable, especially my neck. I can dislocate or partially dislocate (sublux) my joints from even the simplest things like sleep on my side (hip), writing (fingers), carrying a jug of water (wrist), yawning (neck) etc....Despite regular dislocation, it HURTS and each time I do it the joint becomes unstable.



Ehlers Danlos Awareness Ribbon


It doesn't just impact my joints, that is just the primary issue. It causes skin issues, where my skin splits so easily and have lots of horrid very wide scars. It also impacts my gastro-intestinal area (dumping, reactions to food, slow motility), neurological (chiari, sleep, brain-fog), scoliosis, spinal instability, joint pain, dysautonomia (heart rate, digestion, temp control etc), etc. It impacts the whole body as the whole body is made up of connective tissue. Different types, so the different types of EDS impact certain areas more.


For how it impacted me, mostly with my Chiari and development of craniocervical and antlanto-axial instability, dysautonomia and PAIN! Even a simple sleep or walking to the bathroom can cause a joint to sublux. It hurts!




Help financially - https://www.gofundme.com/keep-kirstins-head-on

More Info -

https://kirafaye.wixsite.com/kirstinscause #kirstinscause

#cci #eds #chiari

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