If you think paralysis is a rare problem that will never touch your life, a study released today from The University of New Mexico might be reason to think again.

In what is the most detailed survey to date on paralysis, researcher Anthony Cahill found that 1.9 percent of the U.S. population, or about 5.6 million people, are living with some form of paralysis. That's about 1.6 million more than was previously thought.

And within that group, there are 1.275 million living with spinal-cord injuries, which is five times the previous estimate of about 250,000.

"Strange though it may sound, we never really knew how many people were paralyzed in this country," Cahill said. "We just didn't have a good statistical base to understand it before."

Cahill led the study, which was part of a joint effort with the Christopher and Dana Reeve Foundation and several research universities.

The findings indicate that more attention should be paid to issues facing the paralyzed, through public-health policy and also new research efforts, said Joe Canose, vice president for quality of life at the foundation.

"In terms of spinal injuries, it certainly emphasizes the importance of prevention programs," Canose said.

Spinal injuries are often the result of trauma, and the foundation usually sees a spike in calls each summer from people who have been in car accidents in which they weren't wearing seat belts; motorcycle accidents in which they weren't wearing helmets; and swimming accidents in which they didn't realize how shallow the water was, Canose said.

The reason the results are so different from prior studies is that older studies often just looked at clinical data — through studies of hospital records or studies of very severe disease, Cahill said.

But that data didn't pick up people who have been paralyzed for 30, 40 or 50 years, he said.

"Clinical data just isn't a very effective way to track something like this," Cahill said.

The UNM study tested its questions for several months to make sure they were accurately done, then an outside agency was hired to survey 33,000 households across the country.

Researchers defined paralysis as "a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities."

Some of the other findings include:

• The leading cause of paralysis is stroke, making up 29 percent of cases, followed by spinal-cord injury, making up 23 percent.
  
• Of those who reported being paralyzed, 36 percent said they had "a lot of difficulty" in moving, while 16 percent said they were completely unable to move.
• The average age of those who reported being paralyzed was 52.
• The average length of time since the onset of paralysis was 15.6 years.
• Of those who reported being paralyzed, 54 percent were male and 46 percent were female.
• Three quarters, or 77.8 percent, of those who reported being paralyzed identified themselves as white, 12.1 percent as Hispanic, 3.7 percent as Native American, and 1.1 percent as Asian, other or a mix of races.

Households with a paralyzed member tend to be in lower income brackets than those without, Cahill said.

And one thing that makes that worse is that people have to wait two years after they're paralyzed before they're eligible for Medicare, he said.

"You can't work, but you have no health insurance for two years, and that really affects earnings," he said.

Sen. Jeff Bingaman, a Silver City Democrat, introduced a bill in March that would phase out that waiting period over the next 10 years.

"The 24-month waiting period is a terrible policy — one that contributes to thousands of deaths each year," Bingaman said. "It makes no sense, and it's time to bring it to an end."

That bill could certainly help, but those involved in the study are also looking at the survey results as a way to tackle several other important issues surrounding paralysis, Cahill said.

One of the issues is that caregivers of those with paralysis often also suffer financial consequences. Caregivers are usually a family member, and they often have a hard time finding opportunities to improve their financial situation outside of the caregiver role, Cahill said.

"They're very important and they do great things," Cahill said. "Given the increased numbers of people who are paralyzed, we think we need to pay more attention to their caregivers, as well."

Another issue is the need for more minority and cultural outreach to some groups.

"Native Americans make up 0.8 percent of the U.S. population, but they make up 3.7 percent of people with spinal injuries," Cahill said. "We're not sure why that is, but we need to pay special attention to things like that and reach out more to minority groups."

The results also show a greater need for more research, he said.

"We will probably need to do some follow-up surveys, perhaps make a national registry for those with spinal-cord injuries," Cahill said. "We need to figure out all the next steps."

For more details about the study or information about paralysis, visit the Reeve Foundation online at www.paralysis.org. New Mexicans can also get help online by visiting cdd.unm.edu/infocenternm/.

Contact Sue Vorenberg at svorenberg@sfnewmexican.com.