Ehlers-Danlos Syndrome
Louis
It took three years and two geneticists for Louis to receive his diagnosis— Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia Syndrome, and dysautonomia. He was not diagnosed until the age of 12. As a result of his conditions, Louis’s heart rate falls dangerously low, causing what he describes as a “crash.” Overcome by dizziness and lightheadedness, Louis has to immediately stop what he is doing. He has gastrointestinal problems and his joints sublux and dislocate randomly. Louis, 15, loves to joke around and hang out with his friends. He has been drumming since second grade but now struggles to focus when playing.
It’s upsetting to think about, that now people are going to look at you and say, "This kid’s not normal." I have friends who can’t handle what I go through so they pull away and drop me, and then there are other friends who try to give you things to make you feel better and you don’t want that either. Very overwhelming.
– Louis
