April 22 -- TUESDAY, April 21 (HealthDay News) -- One in 50 Americans, or 5.6 million people, live with some form of paralysis, a new survey shows.
There have been no solid estimates until now, said Joseph Canose, vice president of quality of life for the Christopher and Dana Reeve Foundation, which released the survey Tuesday. The foundation was created by the late actor Christopher Reeve, who was paralyzed in a horse-riding accident in 1995, and his late wife, Dana.
"Around 4 million was guesstimated," Canose said, noting the new survey suggests that number is much larger. "Nearly 6 million people are living with paralysis, substantially higher than previous estimates."
Researchers surveyed more than 33,000 U.S. households, using input from more than 30 experts in paralysis and statistics to develop the study and survey. It was led by Anthony Cahill, a University of New Mexico disability researcher.
The major findings of the report, titled One Degree of Separation: Paralysis and Spinal Cord Injury in the United States:
- Paralysis affects 1.9 percent of the U.S. population. That reflects the number who answered yes to two questions: Do you or does anyone in this household have any difficulty moving their arms or legs?
- Spinal cord injury, one cause of paralysis studied, is more common than thought, with the new survey finding that 1.275 million people in the United States are affected. That is more than five times the number estimated in 2007, the report said.
- Certain groups of people have a higher number of individuals living with paralysis, including blacks and Native Americans.
- Low income is more common among households with someone affected by paralysis. About one-fourth of households with a person who is paralyzed make less than $10,000 a year, while only 7 percent of households in the general population overall make less than that.
- A closer look at the numbers reveals that of the 1.9 percent of Americans who have some form of paralysis, about 0.4 percent is due to a spinal cord injury.
- The average age of those who responded that they are paralyzed is 52; considering spinal cord injury alone, the average age is 48.
- Accidents at work were the number one cause of spinal cord injuries, followed by motor vehicle accidents, and sporting or recreation accidents.
- Besides spinal cord injury, other causes of paralysis reported by respondents include stroke, multiple sclerosis, cerebral palsy and post-polio syndrome.
Next, the foundation will lobby in Washington, D.C., Canose said, using the new survey numbers to help remove barriers that can frustrate those with paralysis from getting and keeping jobs and completing tasks of daily living.
Among improvements the foundation will seek, he said, are better adherence to the Americans With Disabilities Act, more support for the family caregivers of those who are paralyzed, and more and better-trained home health attendants.
The foundation, in the report and in other publications, tries to put a human face on the problem of paralysis. For instance, one person featured in the report, Joel Heifitz, defies the stereotype. He became a quadriplegic in a swimming accident while on vacation in Mexico in 2003.
After intense rehabilitation, Heifitz, now 50, continues in his job as CEO of Concept Laboratories in Chicago, which makes health and beauty products.
"The big news [in the survey] is the numbers," Heifitz said. Once the new statistics sink in, the hope is that policymakers can be convinced that they need to make some changes, he noted.
"Rehabilitation services are not adequate, in many cases," Heifitz added. Neither is access to proper equipment to help those who are paralyzed complete tasks of daily living and get to work, he said. "You are already trapped within your life," he said. "Without the help of aid you are more trapped."
Breaking down barriers to employment and daily tasks such as dressing oneself, is crucial, agreed Betsy Volk of Cincinnati, now 34, who was paralyzed from the chest down in a 1996 motor vehicle accident. "There are so many barriers to employment we can't often become employed," she said.
But she overcome those barriers and works as a program analyst for the U.S. Department of Energy on diversity and civil rights issues. Still, she said, access to services often falls short, especially in the area of home services.
To learn more about how those with paralysis can live a healthy life, visit the Christopher and Dana Reeve Foundation.
SOURCES: Joseph Canose, vice president, quality of life, Christopher and Dana Reeve Foundation, Short Hills, N.J.; Joel Heifitz, CEO, Concept Laboratories, Chicago; Betsy Volk, program analyst, U.S. Department of Energy, Cincinnati