Dramatic help

Israeli diagnoses her own rare condition while watching Grey’s Anatomy

Emily Levi suffered from joint dislocations for years until she found answer in medical drama; today, she is the CEO of a clinic in Petah Tikva that aims to assist others like her

Emily Levi. (Facebook)
Emily Levi. (Facebook)

A young Israeli woman who suffered from a rare and undiagnosed medical condition for years eventually found her answer while watching an episode of “Grey’s Anatomy.”

Emily Levi, 22, from the settlement of Shaarei Tikva in the West Bank, was long considered an unusually flexible person. As a child, she practiced rhythmic gymnastics regularly and was considered talented due to her remarkable elasticity.

“I was always very flexible,” she told Israel’s Channel 12 on Tuesday. “I could always do a split easily and thought it was cool but I never understood the reasons behind it.”

At the age of 15, Levi dislocated her shoulder for the first time. The incident marked the beginning of a long and painful journey that included frequent joint dislocations, especially affecting her shoulder.

“I suffered from pain in my hands until the point that I stopped writing at school. I would dislocate my shoulder on a regular basis,” she said. “At first, no one knew what was wrong with me. Some thought it might be arthritis but nothing helped.”

Levi recounted having to give up running, swimming and gymnastics “all at once,” as her once-favorite activities caused her unimaginable pain.

Doctors were baffled by her condition. She tried experts across the country but no one was able to diagnose her condition.

“No doctor had ever heard of a case of joint dislocations in such high frequency and some didn’t believe me,” she said.

It wasn’t until she started watching the American medical drama “Grey’s Anatomy” that she finally got some answers.

“During one of the show’s episodes, I heard for the first time about the Ehlers–Danlos syndromes. They described a condition identical to mine. I did some online research and was convinced I had it too,” Levi said.

Ehlers–Danlos syndromes, or EDS, are a group of genetic disorders that affect the structure or functionality of the collagen protein — the main structural protein found in the body’s various connective tissues. Symptoms usually include joint pain, loose joints and abnormally stretchy skin, and can develop into chronic pain and joint dislocations.

And while Emily could finally name her condition, her journey was far from over. She waited months to meet an Israeli expert on the disease. But even then, she wasn’t offered a cure.

“I told my parents I couldn’t see myself living with this much pain,” she said. “There were days that all I could do was stay in bed and breathe. I couldn’t even speak because of the pain.”

But the time she spent in bed gave her the opportunity to research. Eventually, she found a treatment for chronic pain that she read about online and was convinced enough to board a flight to the US, where she was treated at a clinic specializing in prolotherapy, a treatment for muscle and joint pain that involves repeated injections of an irritant solution into the joint’s interior, which in turn encourages the body to create more collagen molecules.

And while the treatment didn’t cure Emily’s condition, it gave her a second chance at life. The impact of the treatment on her daily life was so significant that when she returned to Israel, Emily decided to open a clinic that would offer patients with her condition much-needed relief.

Called “Prolo Cure,” the clinic is located in Petah Tikva in central Israel.

Dr. Yeshayahu Benedict, left, a prolotherapy expert and Emily Levi, right, CEO of the Prolo Cure clinic in Petah Tikva. (Prolo Cure website)

“Prolotherapy is a new approach that tries to understand the cause of chronic pain and does not view it as a condition that needs to be fixed via surgery,” Dr. Yeshayahu Benedict, a prolotherapy expert working at Emily’s clinic, told Channel 12.

Prolotherapy and its potential in helping people suffering from chronic pain have gained popularity in the US over the past few years but remain largely unexplored in Israel, the report noted.

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