On Friday I visited Emily and her family who are courageously struggling with a little known but devastating condition called Ehlers-Danlos syndrome.
Emily and her sister rarely leave the beds they sleep in but despite the severity of this condition not much is known about it even across medical fields.
Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.
Emily and her family are campaigning to raise awareness of this horrific condition but also to make sure our doctors, nurses and schools receive the training they deserve to understand and treat effectively.
https://www.facebook.com/Life4emily/posts/2021804144746270 This is a day in Emily's Life.This is an everyday routine for me. Obviously not a normal routine for a young girl but this is my life day in day out. Massive amounts of medication just to get through the day. A very long night time routine. I want to show how invisible this condition is. If it wasn't for me making this video you wouldn't be aware of what goes on. Everybody has problems in their lives wether that be physically or mentally. I want to show everyone how much people can hide their problems! And help make #EhlersDanlosSyndrome visible! Please share comment like and help spread awareness for #EDS #EmilysLifeUk A big thank you to Scott James for creating this video!
Posted by Emily's Life UK Ehlers-Danlos syndrome on Tuesday, November 1, 2016