The illness may strike any time, at any age for reasons that researchers cannot fathom. In a month, a week, sometimes as little as a day, it can paralyze a healthy person.
In the next year, about 2,000 Americans will be hit with Guillain-Barre Syndrome. Some will have colds, sore throats or diarrhea before the onset of the disorder, some will not. Some will be completely paralyzed, others will suffer milder symptoms. Most will recover. About three in 100 patients will die.
"There are more questions than answers," says Dr. Joel Steinberg, a former Guillain-Barre patient and member of the board of directors of the Guillain-Barre Syndrome Foundation International, which today concludes its third annual symposium downtown Baltimore.
In four days of workshops and lectures, about 350 people have discussed the mysterious nervous system disorder. Many of those at the conference moved from one event to another by wheelchair, on crutches or canes.
Treatments have improved since the 1980s and the mortality rate has dropped from 15 percent to about 3 percent in the past 30 years, but experts assembled at the conference this weekend offered no promise of a cure. About 15 percent of patients are "permanently and significantly disabled" by the illness, says Dr. Steinberg, who has recovered from a mild case he suffered in 1981, when he was 40.
"Each case is different," says Estelle Benson, executive director and co-founder of the foundation. "We tell our visitors not to be too optimistic. The $64 question is, 'How long will [the illness] take, when will it get better?' The answer is, nobody knows."
Ms. Benson and her husband, Robert, from suburban Philadelphia, founded the organization in 1980, after Mr. Benson was stricken.
He was an active tennis player and runner who seldom called in sick at work. In November 1979, shortly after getting over a cold, Mr. Benson says he "first felt very tired. In a week, 10 days, I couldn't turn a key, couldn't carry anything. I couldn't write my name."
In less than four weeks he was paralyzed from head to toe. He spent a month in an intensive-care unit, two months in a rehabilitation hospital and two years walking with a cane. Today, at 65, he has no paralysis, but he suffers constant pain in his legs, and his feet are extremely sensitive to the touch.
Named for two French doctors who studied the syndrome in the early 1900s, Guillain-Barre (pronounced ghee-yan ba-ray) affects the peripheral nerves, the nerves that extend from the spinal cord outward. It does not affect the spinal cord or the brain.
It often starts with numbness or tingling in the feet, hands or face. Sometimes there are muscle cramps or back pain. Usually, the symptoms start low in the body and move up, often with alarming speed.
The symptoms are caused by deterioration of myelin, the material that covers nerve fibers. The disappearance of this protective insulation inhibits the nerves' capacity to transmit signals to the muscles, causing paralysis.
Researchers know that the myelin is destroyed by the patient's own immune system. They do not know what triggers this immune system response or why it attacks healthy cells.