Her bedroom, where Olivia Herzoff spends most of her time, is a unique mix of the 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. Posters with inspirational phrases like “You were born to sparkle” and “Wonderful” hang above a plastic cart filled with medical supplies.
Sitting in the middle of it all is Herzoff, a 19-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.”
But her condition isn’t quite as misunderstood anymore, thanks to an Oct. 13 episode of the popular medical drama “Grey’s Anatomy” that featured a character with EDS modeled after Herzoff.
About the illness
EDS is a genetic disorder that affects the connective tissues in the body, leading to symptoms such as hyperextended joints, stretchy and easily torn or bruised skin, joint dislocations and, less often, internal bleeding or curvature of the spine. Research has shown that between 1 in 2,500 and 1 in 5,000 people have symptoms of the condition, though because of a high occurrence of misdiagnosis, it is likely more common.
Herzoff’s father and younger brother also have been diagnosed with Ehlers-Danlos.
In March, Herzoff was invited to speak with the show’s writers about her illness after a mentor introduced her to former “Grey’s” actress Sara Ramirez. Ramirez then introduced Herzoff to showrunner Shonda Rhimes, who invited the teen to visit the set of the TV show in Los Angeles and share her story.
“Gosh, that was just the experience of a lifetime,” Herzoff said.
After that, she didn’t hear anything about it again until Oct. 13, when a friend on the East Coast told her “her episode” had just aired.
“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.”
Following the episode airing, queries for “Ehlers-Danlos syndrome” on Google skyrocketed and hundreds of comments poured out on social media to both Rhimes and Herzoff from people with the syndrome.
The Ehlers-Danlos Society, which aims to raise awareness for the condition, also thanked Herzoff on its Facebook page:
“A huge thank you to Olivia Herzoff for sharing her story with the producers and visiting the set to raise awareness!” they wrote. “... Here’s hoping this is just the start. Awareness is everything; strength begins with hope.”
In the episode, titled “Falling Slowly,” Herzoff’s character is originally thought to be an alcoholic after routinely appearing in the hospital’s clinic for dehydration. After she dislocates her shoulder and just as quickly pops it back in, saying it happens all the time, the diagnosing doctors realize she actually has EDS.
In reality, the path to diagnosis took a lot longer for Herzoff.
It started when she was a 12-year-old with stomach and chest pains, shortness of breath and fainting spells. Herzoff was told she had a condition known as POTS — postural orthostatic tachycardia syndrome — that causes an increase in heart rate and a drop in blood flow to the heart when a person moves from a prone to standing position. Its cause isn’t clearly understood.
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. I’m in pain all the time.
Olivia Herzoff, Arroyo Grande teen who suffers from
It wasn’t until later, when she was experiencing routine shoulder dislocations while playing volleyball and a shoulder surgery revealed her muscles “acting like noodles” and drooping off the bone, that they also diagnosed her with EDS.
“It was a lot to handle, but at that point, I think I just really wanted a diagnosis because I had been searching for two years trying to find what was making me sick, what was making me have so many injuries, and be in so much pain,” she said.
Herzoff describes her day-to-day level of pain as “about a 4, every day, all day,” mostly concentrated in her joints.
“It’s just sharp and aching mostly,” she said with a shrug. “When I stand up, I have dislocations. My kneecaps have a tendency to move around a lot. Also my knees lock back because they hyperextend so far. So sometimes I’ll have major injuries because my joints will get stuck.”
Injuries are common among those with EDS: Besides frequent dislocations of joints, Herzoff has had bulging and herniated disks, stomach paralysis that had her connected to a feeding tube, and she is now awaiting surgery for cerebrospinal fluid leaks (essentially holes in the pocket of fluid at the base of the head that cushions and supports the brain; leaks lower the pressure of that pocket, causing headaches and difficulty sitting upright).
Because of her experiences, Herzoff comes across as a talking encyclopedia of medical knowledge. She tosses out phrases like “autonomic nervous system” — the part of the nervous system in charge of basic bodily functions like breathing, the heartbeat and digestive functions — and “dysautonomia” — any medical condition like POTS that is a malfunction of that system — like an expert.
There were so many people thanking me (after the episode aired). 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.
Olivia Herzoff, Arroyo Grande teen who suffers from
But then she couples those with revelations that remind you, despite her expansive knowledge, that she’s still a teenager.
For example, she calls her autonomic nervous system “Filbert.”
“He’s a pain in the butt,” she said. “He doesn’t tell the vessels in my legs to constrict, so sometimes when I stand, I pass out.”
Herzoff’s condition will likely continue to worsen as she ages.
Because of her conditions, Herzoff has had to dial back some of her former passions like horseback riding or sports, but that’s left room for new activities: She knits and crochets, paints, reads and enjoys other hobbies that can be done easily from her room.
“It’s really great the progress that has come out of awareness and people using their voice,” she said. “I’m always thinking of new ways to try and spread awareness.”
Until recently, Herzoff was studying psychology at Randolph College in Virginia, with the goal of one day working with children and teens who also have chronic illnesses. She’s since had to take a year off from school and return home to Arroyo Grande as she prepares for seven medical procedures on ailments associated with her EDS.
But not even that is going to stop her on her quest to raise awareness; she’s active on platforms such as Facebook and Twitter where she routinely posts her own and her friends’ experiences with EDS, as well as research and information on the conditions.
“I have an invisible illness,” she said. “So it’s awesome that I have a platform to share what it is really like.”