Roberts, a 26-year-old nurse, was four months pregnant. She had the flu about a month before her hospitalization, but continued feeling weak and having trouble moving even after she recovered.
“I would pick my arms up and they would move like a Parkinson’s kind of movement,” Roberts said. After a neurological examination, doctors told her she had Guillain-Barré syndrome: a rare disorder where the body’s immune system attacks its own nerves.
Roberts is one of three health care workers, all young women, who have been diagnosed with the disorder in Spokane over the past year and a half.
Liz Phenneger, a nurse who used to work at Deaconess Hospital, is currently recovering from Guillain-Barré at St. Luke’s Rehabilitation Institute.
She started feeling weak following a flu vaccine and was diagnosed on Oct. 24.
Phenneger spent almost two weeks at Sacred Heart before moving to St. Luke’s for recovery and said she still has limited strength. At times, she feels like she’s “holding on to an electrical wire.”
“I can’t bend my feet, it just feels like I’m wearing big boots or something,” she said.
Guillain-Barré typically develops following another illness that causes a large immune system response. The triggering infection could be influenza or another viral or bacterial infection.
Emerging data is also showing a link between Zika virus infection and Guillain-Barré, and countries with large numbers of Zika cases have also seen an increase in the syndrome.
“Nerves are very susceptible to being misidentified as something foreign,” said Dr. Erik Ensrud, a neurologist at St. Luke’s. When the body’s immune system is on heightened alert, it sometimes overreacts and begins attacking the myelin that forms a sheath around nerves.
Guillain-Barré is a one-time attack on the nervous system that can take people months or even years to recover from. Its symptoms can mirror those of other neurological conditions like multiple sclerosis where the nervous systems is attacked repeatedly, Ensrud said.
In serious cases, the immune system may attack the nerves in the diaphragm, causing breathing problems that may force patients to breathe using a ventilator while they recover.
People can die from Guillain-Barré, but that’s very unlikely for anyone who seeks medical care in time, Ensrud said.
Roberts’ diagnosis at Sacred Heart was quick because a physician assistant who also worked for Providence had recently come down with Guillain-Barré.
Ensrud said the fact that multiple people in the same line of work have developed the syndrome is more likely a fluke than anything else.
“Sometimes the incidents, they’ll group and it naturally makes people think, ‘Is there something brewing?’ ” he said.
Only eight people in Spokane and 129 in Washington were hospitalized for Guillain-Barré in 2014, the last year data is available from the Washington Department of Health. Cases are not tracked by the Spokane Regional Health District because it’s a syndrome, not an infectious disease.
When she was hospitalized, Roberts’ biggest concern was for the well-being of her baby.
“I just prayed that whole night. I didn’t sleep,” she said. She credits the Sacred Heart team for giving her immunoglobulin treatment immediately, an action she said helped her avoid a much more serious case.
“They recognized the symptoms and decided that would be the best option for me. That’s probably what saved me and the baby,” she said.
In total, she spent about a week paralyzed and another week in a rehabilitation center.
Her son, William, was born in March with no complications.
“He’s perfect,” Roberts said.
Since her recovery, Roberts said she’s heard from other young women through Facebook who have been diagnosed. In some cases, they were initially misdiagnosed because the syndrome is so rare it’s not always considered.
“Guillain-Barré is just rare enough that it’s not their first thought, but it’s also not rare enough that people aren’t being affected by it,” she said.
Phenneger is hopeful she’ll be able to go come for Christmas with a walker and some help around the house.
“I’m hopeful that because I didn’t end up on a ventilator, my course was a little bit shorter than some,” she said.
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