Her Arroyo Grande bedroom, where Olivia Herzoff spends most of her time, is a unique mix of teenager and medical equipment.
On her bed — a hospital-style cot with a safety bar on one side — rests an embroidered pillow with a horse on it, and a stuffed animal wearing a feeding tube. Next to a framed senior portrait on her bedside table is a transparent pill box with the week’s medications.
Sitting in the middle of it all is Herzoff, a 20-year-old college student with dreams of studying psychology despite a debilitating tissue condition known as Ehlers-Danlos syndrome.
“The hardest part of it all is how misunderstood it is, and how I look fine on the outside, but my body is fighting itself on the inside,” she said. “I’m in pain all the time.”
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EDS is a genetic disorder that affects the connective tissues in the body, with symptoms such as hyperextended joints, stretchy and easily torn or bruised skin and joint dislocations. Herzoff’s condition will likely continue to worsen as she ages.
But EDS isn’t quite as misunderstood anymore, thanks to an Oct. 13, 2016 episode of the popular medical drama “Grey’s Anatomy” that featured a character modeled after Herzoff.
“There were so many people thanking me (after the episode aired),” she said. “And I was like, ‘I’m not really the one to thank, you know?’ I got this amazing opportunity, and of course I want to do everything I can to spread and make awareness of my illness and hope for a cure one day.”
“I have an invisible illness,” she said. “So it’s awesome that I have a platform to share what it is really like.”