The story of Lia
Hi! I’m 29 years old and I suffer from Ehlers Danlos Syndrome I get lots of dislocations during the day (sometimes up to 80). Ehlers Danlos Syndrome is caused by a faulty collagen, there’s 7 types (I have type 3 hypermobility) which causes dislocations, subluxations, poor healing, bowel problems, bladder problems, stretchy skin and lots more.
I now have to use an electric wheelchair as everytime I attempt to walk my hips dislocate which is very painful. I wear splints (only when required).
My jaw dislocates fully everytime I yawn, open my mouth wide. Thankfully I’ve figured out how to put the majority of my joints back in (it’s taken many years to learn.)
I have started blogging my experience and have also blogged a days worth of dislocations which was quite interesting!
http://lilmissbendysedsfight.blogspot.co.uk/?m=1
I’m also the area coordinator for Carlisle for the charity EDS UK
I hope word gets out about all the rare diseases soon! More awareness is required!
Connect with others who understand on the international EDS community:
https://www.rareconnect.org/en/community/ehlers-danlos-syndrome