Published: 10/05/2016 Tags: Ehlers-Danlos in the News

10 People Discuss Life With Disability and Illness

“I have a connective tissue disorder called Ehlers-Danlos syndrome, which results in hypermobile joints and a number of other health conditions and concerns affecting my digestive, respiratory, skeletal, circulatory, immune, and other bodily systems.

“EDS was first described by Hippocrates. It’s not a new disease; it just needs research. There is a lot of ignorance and denial in the medical field when it comes to connective tissue disease, so if you want answers, you have to advocate for yourself. It could save lives in ERs if doctors knew how to recognize an aortic dissection, or even just knew more about EDS than hypermobile joints, which isn’t to say doctors are the only ones with a lack of understanding. People without EDS tend to take for granted eating standard food, walking a few blocks, using the stairs when the elevator is down, or only seeing a doctor once or twice a year. They can eat what they like, when they like, without worrying if they’ll be in too much pain to see a friend or go to class. Their hips don’t come out of place while sitting, and they don’t collapse because their knees are not in place.

“One thing I run into a lot is people staring, which seems to defy basic manners. I know I’m young, and maybe the people who stare feel bad, but…everyone knows there are children with cancer, so why can’t there be young adults with other diseases? Don’t stare. Offer a seat instead of taking up the disabled seats on the subway with shopping bags. Leaving nasty notes on cars with disabled stickers is the suburban equivalent of this. There is a reason that person has a sticker!

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