JACKSONVILLE, Fla. – It’s a rare but potentially serious disease that affects thousands of Americans every year.
Guillain-Barré syndrome causes the body’s immune system to attack its own nerves. The exact cause is unknown, and there is no cure — but medical experts say most people can recover completely with prompt attention and proper treatment.
“If you think of your nervous system as electrical cords, essentially Guillain-Barré attacks that protective insulation around the cells,” said Dr. David Rice, the ICU Medical Director at HCA Florida Memorial Hospital.
According to the Mayo Clinic, the syndrome can cause numbness, weakness and, in severe cases, paralysis. Rice says hallmark symptoms often begin with numbness in the toes and feet, gradually working their way up the legs.
“If a patient starts having things like trouble walking upstairs or just profound weakness in their legs, trouble standing, keeping balance, that sort of thing — or in extreme cases, trouble breathing, swallowing, speaking - anything that different than your typical flu sluggishness, that is something to watch out for,” Rice said.
The Centers for Disease Control and Prevention (CDC) estimates between 3,000 and 6,000 people develop Guillain-Barré syndrome every year in the United States.
Two-thirds of patients report symptoms of an infection in the six weeks before Guillain-Barré symptoms begin. Plasma exchange and immunoglobulin therapy are among the primary treatment options.
David McKinley remembers the morning it started — a tingling sensation in his right fingertips. He pushed through it, got up, went to work and even coached his travel softball team.
He had recently recovered from the flu, but then, things got worse.
“I couldn’t really stand up out of bed,” McKinley said.
He was soon in the ICU, his lungs filling with fluid. He was intubated — and within 24 hours, he was trached.
“He was paralyzed from the neck down, could not move his arms, fingers, nothing,” said his wife, Taylor McKinley.
The McKinleys say their faith, a positive attitude and a strong support system helped carry them through the most difficult stretch.
“Our faith really kept us going,” David said.
Extensive occupational and physical therapy, along with the dedication of his medical team, helped David reach the point of recovery.
“Having a positive attitude — with Taylor, with my friends who were visiting, with family, with the staff — I mean, all of those things helped me get through it,” he said.
Taylor McKinley says one of the most important things a patient’s loved ones can do is serve as a medical advocate — at one point during his illness, her husband was unable to speak, making her role as decision-maker critical to his care.