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.




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