Grace was transferred to the London hospital, where specialists recognized the progressing paralysis of Guillain-Barre, which remains incurable more than 150 years after it was described. In 1859, Jean Baptiste Octave Landry de Thezillat reported the 10 cases of what he termed ascending paralysis, so called because it often begins in the feet, although it also can descend from the cranial nerves of the head. In 1916, three French physicians, Jean-Alexandre Barre, Georges Guillain and Andre Strohl (whose work wasn't acknowledged at the time) made a scientific presentation on what later came to be called Guillain-Barre syndrome.
The autoimmune disorder most often follows viral maladies such as upper respiratory infections, or diarrheal infections. More rarely, it's set in motion by surgery, trauma or pregnancy. But the condition may be best-known as a side effect for hundreds of swine flu vaccine recipients in 1976. Although Guillain-Barre remains a documented risk of vaccinations, it produces one extra case for every million people vaccinated for the flu, Gorson said. People are far more likely to get it as a complication of the flu than from the vaccine to prevent the flu, he said.
There is no known cure for Guillain-Barre, although two standard treatments can hasten recovery by 50 percent, Gorson said. Most doctors try a five-day course of intravenous immunoglobulin infusions, which weaken the body's attack on itself, because they're simpler to administer. Plasma exchanges require a central line to remove blood from the body, take out the plasma and then return the red and white cells, and this poses a higher risk of infection.
Extensive paralysis has been well-described in medical literature as a complication of very severe Guillain-Barre. In some cases, "you can be completely paralyzed such that you are in a locked-in state," Gorson said. About 5 percent of cases end in death. The more extensive the symptoms, the less likelihood of full recovery, but 60 percent to 80 percent of patients do recover well.
The good news is that the peripheral nerves that are attacked by the disorder have the ability to regain their protective myelin sheaths and regenerate. Recovery, even if slow, can continue up to four years after the illness takes its neurologic toll.
Although there are interesting experiments being conducted on animals, a check of the National Institutes of Health's clinical trial listings finds none on Guillain-Barre. However, Dutch researchers have been experimenting with a second IVIG, or intravenous immunoglobin, course for patients who don't respond to the first. That trial is expected to be expanded into a multi-center international study within the next year.