May 2014 Ehlers–Danlos Syndrome

June 01, 2014  •  Leave a Comment

For May's theme, I chose to use a photo shoot of Sarah Jones who is using modeling as a way to bring awareness to Ehlers-Danlos Syndrome.

Explore & Capture

"I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome, which causes me to be hypermobile, so I'm a little bit of a contortionist. I'm constantly dislocating or partially dislocating my joints while doing simple everyday activities such as walking, climbing a few steps, or letting my son swing my arm while he holds my hand to cross the street. I am in constant pain from my muscles overworking themselves to compensate for faulty collagen in the ligaments and tendons that are supposed to hold everything in place, not to mention the joint pain from dislocations! I also have Dysautonomia, or more specifically, Postural Orthostatic Tachycardia Syndrome, so my autonomic nervous system doesn't work properly. For example, my heart rate is too fast, my blood pressure is too low, my digestion is sluggish, my pupils do not dilate and constrict appropriately with light, nor do my blood vessels dilate and constrict properly with upright posture, and my body temperature can range anywhere from 95 degrees to 101 degrees at any given time.

I hope to use modeling as a way of extending my reach in spreading awareness for both EDS and POTS. A lot of people with chronic invisible illnesses are misunderstood by the medical community, family members, friends, and the general public, because they don't look sick. I want to help the "but you don't look sick" campaign and show the world that just because someone looks fine on the outside, that doesn't mean they aren't sick on the inside or in severe pain. When I first started fainting from POTS, people thought I was faking the faints, but in reality I was trying to fake that nothing was wrong with me. The same is true of many others with chronic illnesses and chronic pain."

~ Sarah Jones



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