Rare Syndrome Paralyzes UK Flight Attendant: Know the Signs

Photo Credit: Carter News AgencyOne day, 29-year-old Gemma Flanagan was partying in Las Vegas during a stopover in her job as a flight attendant. Soon after, she was hospitalized, unable to move, speak or swallow, and given the shocking diagnosis of Guillain-Barré Syndrome, a rare condition that affects only about 1 person in 100,000.

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“To be honest I had no idea what it was—I couldn't even pronounce it,” Flanagan, who lives in Liverpool, England, told the Daily Mail, which first reported her story.  “But I wasn’t too worried. Doctors told me it was a mild case and I’d be home in three days.”

What followed has been a remarkable tale: many difficult months of hospitalization, total paralysis, and the eventual beginnings of recovery—with Flanagan turning her-near death experience into a tenacious turn at modeling with an agency that features disabled models. 

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First, though, came the onset of Flanagan’s syndrome, when she collapsed after Las Vegas and saw her situation quickly worsen. In the hospital, she was quickly moved to intensive care before becoming paralyzed.

“It was weird. I felt fine, but my body just wasn’t working,” she said. “Then my friend came to visit me and she asked me what was wrong with my face. I looked in the mirror and when I tried to smile, my mouth just wouldn’t move. I was devastated. I suddenly realized how serious it all was.”

Flanagan in the hospital. Photo Credit: Carter News AgencyIn cases of Guillain-Barré (ghee-YA-buh-RAY), according to the Mayo Clinic’s website, the immune system attacks the body’s nerves. The typical first symptoms are weakness and tingling in extremities, and can quickly spread, eventually leading to complete paralysis.

Frighteningly, the exact cause of the syndrome is unknown—though it often follows a case of the flu or other infectious illness—and there is no known cure. The worst-case scenario is death, as happened with singer Scott McKenzie (“San Francisco (Be Sure to Wear Flowers in Your Hair)”, who died in August after a long bout with the syndrome.

“So much is unknown about the syndrome,” Ken Singleton, executive director of the GBS-CIDP Foundation International, a support organization for Guillain-Barré and a similar disorder, told Yahoo! Shine. The fact that it’s so rare—with about 8,000 cases annually in the U.S., he said—adds to the mystery. “Plus,” he said, “each person reacts differently.” That can lead to misdiagnoses.

In the flight attendant’s case, Flanagan had originally ignored the pain and tingling she felt because she attributed it to wearing high heels after a night out in Las Vegas.

“When I woke up after the night out in Vegas I was really achy and had pins and needles in my feet,” she told the Mail. “I’m a really girly girl, and love wearing heels, so I’m used to getting sore feet after a night out.”

But she collapsed at home in the UK on her way to work a few days later before being hospitalized. Her diagnosis came after a telling spinal tap.

“In Guillain-Barré patients, the cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual,” explains the website for the National Institute of Neurological Disorders and Stroke. But it’s not the only telltale sign, and, because several disorders have symptoms similar to those found in Guillain-Barré, doctors examine and question patients carefully before making a diagnosis, looking for a particular collection of symptoms.

Eventually, Flanagan was able to leave the hospital in Surrey and returned to her hometown of Liverpool to endure five months of physiotherapy, during which time she learned to walk again.

“It was a tough time, but every little thing was a big achievement,” she said about her difficult recovery. “I’d get so happy if I could just wiggle my toes or hold a pen.”

Eventually, while browsing the Internet, she found Models of Diversity, a UK-based agency that advocates for diversity in models. A recent Facebook post mentioned a photo shoot, “Fun Saturday havin a test shoot with the fabulous models of diversity & driving over lots of London bridges,” while other posts mention getting a custom-made supportive body suit, a new motorized scooter, and, most recently, the Daily Mail article: “Crazy how many random people felt the need to rant about my dam heels & not actually read the thing properly!! Who knew I could be so controversial.”

Flanagan also volunteers for the Guillain-Barré Support Group in the UK. Finally, Flanagan credits her supportive friends, family and boyfriend for getting through her ordeal. “I hope my story will inspire people, and change how disability is thought of,” she said.

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