Article from The New York Times

The New York Times: published April 21, 2009

Study Raises Estimate of Paralyzed Americans

By RONI CARYN RABIN

It may be hard to fathom, but in the haystack of government health statistics that track cancer, car accidents, twin births to women over 40, fat teenagers and people who quit smoking, there has been no reliable estimate of the number of Americans affected by paralysis.

Until now. A study to be released on Tuesday by the Christopher and Dana Reeve Foundation reports that far more Americans than previously estimated are paralyzed to some degree: 5.6 million people, representing 1.9 percent of the population, or roughly 1 in 50 Americans.

Previous estimates — or “guesstimates,” as some have called them — hovered around 4 million at most, and some were as low as 1.4 million.

“Nobody had any idea what the numbers were, because no one ever tried to find out,” said Joseph Canose, vice president for quality of life at the Reeve Foundation’s Paralysis Resource Center, who led the study. “There were many different ways of counting it, and there was no common definition, and the numbers were all over the place.”

But the figures, which could have enormous implications for public policy, research financing and health care, are already causing controversy, because the estimates for paralysis caused by certain diseases and conditions differ drastically from long-accepted numbers.

The new report counted 1.275 million Americans with paralysis resulting from spinal cord injuries — five times the previous estimate. While stroke, which affects the mobility of 1.6 million Americans, was found to be the leading cause of paralysis, spinal cord injury was the second-leading cause, at 23 percent of cases.

The study extrapolated the figures from a meticulously designed population-based telephone survey of about 33,000 households, which was developed by researchers at the University of New Mexico with input from top experts from around the country.

The survey used a very broad, functional definition of paralysis, counting as paralyzed anyone who had either “inability” or “difficulty” moving arms or legs, as long as it was caused by a central nervous disorder and not arthritis or back trouble. The survey relied on reports from family members, not medical records. Almost half of the respondents deemed to be suffering paralysis had “some” or “a little” difficulty moving.

Gloria Krahn, the director of the Division of Human Development and Disability at the Centers for Disease Control and Prevention, said the numbers may look high because paralysis was defined as a condition affecting function, rather than as a medical diagnosis.

“This is the first study that looks at paralysis in this kind of way,” she said. “It tells the story of how large this group is.”

Another finding starkly at odds with prevailing notions is the number of people suffering paralysis due to multiple sclerosis. The report found 939,000 people in this category, more than double previous estimates of the total number of Americans with the disease — 400,000.

Nicholas LaRocca, a vice president at the National Multiple Sclerosis Society, called the new estimate “puzzling.”

“They are very different from any numbers that have been produced pretty much anywhere in the world using accepted epidemiological methods, which puts one in a sort of difficult position, because this is a well-designed study,” he said.

Dr. LaRocca suggested that some people who have difficulty moving may have diagnosed multiple sclerosis in themselves, using the Internet.

The new study was conducted in part because of skepticism within the Reeve foundation about the common notion that only 250,000 Americans are affected by spinal cord injuries.

“Chris never believed that number,” Mr. Canose said. “He thought it was more.”

I found this article to be startling. I am paralyzed and I still had no idea there were that many people living with paralysis. You can click here to view the original article.

Jenni