For polio survivors, another hurdle decades later

Dr. Lauro Halstead, who directs the post-polio program at the National Rehabilitation Hospital in Washington, suffers from PPS

From Rea Blakey
CNN Medical Unit

WASHINGTON (CNN) -- As many as 20 million people around the world who survived childhood polio are at risk of developing new symptoms of the disease decades later, the March of Dimes said Monday, but too little is known about the condition to adequately address it.

The organization has released two reports on post-polio syndrome (PPS) to help doctors and patients find ways to diagnose and treat the illness.

"There is no definitive test for PPS," said Dr. Christopher Howson of the March of Dimes, "so it's very hard to diagnose and is generally done through a process of excluding other disease conditions."

Dr. Lauro Halstead, who directs the post-polio program at the National Rehabilitation Hospital in Washington, is among those polio survivors now grappling with the syndrome. He first contracted the disease as a college student in the 1950s -- a period when mere mention of the condition could cause panic, because it was so contagious and so debilitating.

ALSO Global deadline set to eradicate polio by 2005   How many people have PPS worldwide? U.S. 250,000 Germany 40,000 Japan 30,000 France 24,000 Australia 16,000 Canada 12,000 UK 12,000 Source: March of Dimes   ALSO • Roosevelt Warm Springs Institute for Rehabilitation • National Rehabilitation Hospital Post-Polio Program • NINDS Post-Polio Syndrome Information Page

"You could go to bed one night and wake up the next morning paralyzed," said Halstead, who had to live temporarily in an artificial breathing machine called an iron lung when the virus paralyzed his chest muscles.

In the initial episode of acute polio, patients can lose 60 percent to 70 percent of their nerve cells. Surviving cells find muscle fibers that still work and attach to them, regaining function. But after 30 or 40 years -- or sometimes less -- the ability to repair nerve cells seems to be lost, causing post polio syndrome. No one knows why.

"To have it recur is extraordinarily unpleasant and psychologically devastating, which is why a lot of people throw up barriers, barriers of denial," Halstead said.

Maria Montero, who had polio when she was 10, ignored symptoms like muscle weakness, pain and severe fatigue for a year before seeking help.

"I am sure polio patients -- survivors -- all over the world ... they don't know what's happening to them," she said.

Halstead says as a general rule, patients who originally had a severe case of polio are at greater risk of developing PPS. But even a very mild case of polio can return with a vengeance. In fact, some cases were so mild, the patients never knew they were infected.

"It was sort of like a silent infection," Halstead said. "It infected their central nervous system quite seriously, but not enough that they had clinical symptoms back then, but seriously enough that now, 40 or 45 years later, they're having very significant problems."

Survivors who conquered the disease and went on to live full, active lives are now being told to rest and conserve their limited personal energy whenever possible. Often, that forces them back into the leg braces, crutches and wheelchairs they fought so hard to abandon.

"It's difficult when you realize you're having something nobody told you about," Maria Montero said. "Because they said before you had to use it or lose it, your muscles. Now they say -- they tell you -- conserve it to preserve it. So now you can't do anything."