More People Found to be Living with Paralysis

< Apr. 22, 2009 > -- A new survey released this week shows that one in 50 Americans, or 5.6 million people, live with some form of paralysis.

The survey was released by the Christopher and Dana Reeve Foundation in Short Hills, New Jersey.

Until now, there had been no solid estimates of the number of people living with paralysis, according to Joseph Canose, vice president of quality of life for the foundation.

"Around 4 million was guesstimated," Canose says, noting the new survey suggests that number is much larger. "Nearly 6 million people are living with paralysis, substantially higher than previous estimates."

Specific Research Findings

Researcher Dr. Anthony Cahill from the University of New Mexico led a team which surveyed more than 33,000 US households, using input from more than 30 experts in paralysis and statistics to develop the study and survey.

The report, titled One Degree of Separation: Paralysis and Spinal Cord Injury in the United States, outlined these findings:

• Paralysis affects 1.9 percent of the U.S. population. This 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 US are affected. That is more than five times the number estimated in 2007, the report says.
• Certain groups of people have a higher number of individuals living with paralysis, including African Americans 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 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.

Putting a Face on the Issue

In this report, as well as its other publications, the foundation works 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. Quadriplegia affects both arms and legs.

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 says. Once the new statistics sink in, the hope is that policymakers can be convinced that they need to make some changes, he notes.

"Rehabilitation services are not adequate, in many cases," Heifitz adds. Neither is access to proper equipment to help those who are paralyzed complete tasks of daily living and get to work, he says. "You are already trapped within your life. Without the help of aid, you are more trapped."

Betsy Volk of Cincinnati, now 34, was paralyzed from the chest down in a 1996 motor vehicle accident. She agrees that breaking down barriers to employment and daily tasks such as dressing oneself, is crucial. "There are so many barriers to employment we can't often become employed," she says.

But she overcame those barriers and works as a program analyst for the US Department of Energy on diversity and civil rights issues. Still, she says, access to services often falls short, especially in the area of home services.

Next Steps

According to Canose, the foundation will begin to lobby in Washington, DC, 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.

For more information, always consult your physician.

More About Acute Spinal Cord Injury

The spinal cord is a bundle of nerves that carries messages between the brain and the rest of the body.

Acute spinal cord injury (SCI) is due to a traumatic injury that either results in a bruise (also called a contusion), a partial tear, or a complete tear (called a transection) in the spinal cord. SCI is a common cause of permanent disability and death in children and adults.

About 11,000 people a year sustain a spinal cord injury. As many as 250,000 to 400,000 people in the US are living with a spinal cord injury, according to the National Spinal Cord Injury Association. More than half of all SCIs occur among young people between the ages of 16 and 30 years. The majority of SCI victims (82 percent) are male.

There are many causes of SCI. The more common injuries occur when the area of the spine or neck is bent or compressed, as in the following:

• birth injuries, which typically affect the spinal cord in the neck area
• falls
• motor vehicle accidents (where the person is either riding as a passenger in the car or is struck as a pedestrian)
• sports injuries
• diving accidents
• trampoline accidents
• violence (gun shots or stab wounds)

After a traumatic event, a person may have varying degrees of symptoms associated with the severity and location of the SCI.

The location of the injury on the spinal cord will determine how severe the injury will be. For example, an injury that damages the cervical spine (in the neck area) can cause loss of muscle function or strength in all four extremities (arms and legs). This is referred to as tetraplegia (formerly called quadriplegia). An injury of this type often requires mechanical breathing assistance, as with a ventilator, as the chest muscles may also be weakened.

An injury to a lower part of the spinal cord that causes paralysis and loss of function in the legs and lower body is called paraplegia.

The extent of the damage to the spinal cord determines whether the injury is complete or incomplete. A complete injury means that there is no movement or feeling below the level of the injury. An incomplete injury means that there is still some degree of feeling and movement below the level of the injury.

A traumatic event that results in a SCI is devastating to the person and the family. The healthcare team educates the family after hospitalization and rehabilitation on how to best care for the person at home and outlines specific clinical problems that require immediate medical attention by the patient's physician.

The disabled person requires a focus on maximizing his/her capabilities at home and in the community. Positive reinforcement will encourage him/her to strengthen his/her self-esteem and promote independence.

A person with a SCI requires frequent medical evaluations and diagnostic testing following hospitalization and rehabilitation to monitor his/her progress.

Always consult your physician for more information.