I found my rare illness after symptoms appeared on ‘Grey’s Anatomy’

The hit series “Grey’s Anatomy” might be fiction, but for one 22-year-old, it solved her medical mystery.

Emilie Levy, from Israel, had been suffering from unexplained pain in her wrists and ankles since she was 12. As a teen, she also began to experience dislocations of her shoulder, hip and jaw – yet doctors were stumped.

But one day, while watching the Shonda Rhimes show, she recognized her symptoms on-screen.

“I was watching through Season 13 when I spotted something,” Levy told NeedToKnow.online. “There was a female patient complaining about a hangover after just one drink and then during the exam, they were able to easily dislocate her whole arm.”

She recalled getting “almost immediately hungover” from “only a small amount” of alcohol, although she never knew why until now.

Levy from joint pain and dislocations from a young age, yet doctors continued to scratch their heads.
Jam Press/Emilie Levy

“After I saw them dislocate her shoulder, I remember thinking that it reminds me exactly of myself,” Levy continued.

The woman on-screen was eventually diagnosed with Ehlers-Danlos syndrome disorders, a group of hereditary syndrome disorders which cause overly flexible joints as well as stretchy and fragile skin.

But even after recognizing all the signs on TV, doctors told her she was wrong, blaming the dislocations on hypermobility syndrome.

Emilie Levy
It wasn’t until she saw her symptoms mirrored in the hit show that she realized what was wrong.
Jam Press/Emilie Levy

Eventually, she sought out a second option and in 2019 was finally diagnosed with Ehlers-Danlos syndrome.

But, despite the diagnosis, her problems were far from solved. In September 2020, Levy was involved in a car accident and dislocated her ribs after another driver fell asleep at the wheel and crashed into her vehicle. Only six months later, her thoracic region and chest were dislocated as a result.

“It was like a domino, from the moment the first rib dislocated, the deterioration was so fast, day by day it became worse,” she said.

Emilie Levy
Levy, right, took her life into her own hands and demanded a diagnosis and proper treatment.
Jam Press/Emilie Levy

If she bent over, drove or sat for longer than 30 minutes, lifting things, coughing or even breathing, it dislocated. She would even wake up from her sleep to put her ribs back in her place as often as every 10 minutes.

“I got to a point where I told my parents that I couldn’t imagine living like this, with an unbelievable level of pain, not even for two more months,” she recalled.

While there isn’t a cure for Ehlers-Danlos, Levy took her health into her hands once again and searched “slipping rib syndrome treatment” online.

Emilie Levy
Levy, right, got into a horrific car accident, which only made her condition worse.
Jam Press/Emilie Levy

“It was the first time I came across someone explaining exactly what I had been complaining about all these months,” she said.

Crying, she sat her parents down to watch the clip she discovered and eventually flew out to Florida to receive treatment two months later.

“I flew to his clinic for three months to undergo major treatment which eventually led to a huge improvement in my function, where I stopped dislocating,” she said of the life-changing process.

Emilie Levy
Now, she’s inspired to become a doctor and even opened up her own clinic alongside a surgeon to help others.
Jam Press/Emilie Levy

Due to her life-long health complications, Levy was inspired to become a doctor, eventually achieving her goal in February 2022 when she opened a medical clinic with surgeon Dr. Yeshaiau Benedict in Israel.

“The clinic focuses on prolotherapy, a regenerative form of treatment that can make a significant difference to the lives of Ehlers-Danlos patients and a lot of other orthopedic injuries and pain including various sports injuries,” she said.

With the help of Dr. Benedict, who she called an “outstanding and unusual orthopedic surgeon,” Levy now attempts to help “as many people as possible.”

“Emilie is only a 22-year-old woman but she has walked a long way so far in her quite short life – she is a smart, stubborn, intelligent woman,” Dr. Benedict said of Levy, who will need her own prolotherapy treatments for the rest of her life. “She pursues her goals in life and does not like [anyone] stop her.”

“I am grateful for the privilege that has fallen to me and to help people return to their lives and heal their pain,” she said.

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