The number of Americans suffering from paralysis is vastly higher than previously thought, according to a new study from the Christopher and Dana Reeve Foundation being released today.
The study determined that 5.6 million Americans are paralyzed from all causes, which is 40 percent more than previously thought.
The higher number is just one more reason the nation needs to make an investment in paralysis research, said Alexandra Reeve Givens, daughter of actor and strident paralysis research supporter Christopher Reeve.
"It really hit home for us that we need to do a better job," said Givens, who married Garren Givens last September. "We need to make an investment for the entire country -- to help people get back into the work force, to educate employers, too, because something of a stigma is still there."
The Definition of Paralysis
One reason for the big disparity with previous statistics may be the broad definition of paralysis used in the Reeve Foundation study.
The new study's definition included not just people who have the inability to move but also those who have difficulty moving. Givens rejected the idea that the description is too broad.
"The truth is that there is no firmly established definition of paralysis," said the 25-year-old, who now practices corporate law. "What we've used here is the same approach as the world health organization. We've tried to look at functionality instead of medical causation. It's a symptom-based approach."
Givens said the research included 60 academics to ensure the results would be accurate, and the foundation also team with representatives from the Centers for Disease Control and Prevention and 14 universities.
One neurosurgeon said the study's results may not include all paralysis patients.
"One group not included, as far as I can tell, but who should be are those with spinal tumors from breast or liver metastases or others. Adding this group might add another 100,000 patients a year," said Dr. Arthur L. Jenkins III, neurosurgical spine program co-director at Mount Sinai School of Medicine. "I hope this is a wake-up call -- people may not notice the paralyzed around them."
Jenkins added that the broad description may help humanize the condition.
"I think of this as an iceberg effect. If people realize that the people they see who are paralyzed are just the tip of the iceberg in terms of the numbers affected, it humanizes it," he said. "It would be great to get more public support behind funding for care and cure. These aren't people who are cripples. We shouldn't think that they have profound limitations, but they could use a little help and a little more understanding."
Paralysis Research and the Reeve Family
The topic of paralysis research gained greater traction in the media following Christopher Reeve's 1995 horse riding accident, which left him paralyzed from the neck down.
The "Superman" actor spent the rest of his life tirelessly working on behalf of spinal cord research, all with the hope that one day he'd be able to walk again.
"In the years after the accident, he just would never give up," Givens said. "And it was different from the years before [the accident], because it was not about trying to get a role in a movie. It was about his next speech. It wasn't about the next marathon or the next 60-mile bike ride. It was about breathing on his own for 10 minutes. So the parameters shifted, but he still brought the same energy to everything he did."
In March, President Obama signed the Christopher and Dana Reeve Paralysis Act, which provides funds for research and care for paralyzed people and others with disabilities. His son, Matthew Reeve, appeared at the bill's signing.
Givens, who as a child appeared in "Superman" with her father, said she believed her father would have been pleased with Obama's move.
"He would have been delighted with the leadership Obama has shown, particularly so soon," she said. "It's just given hope to an entire population of people."
"And for me, it's incredibly exciting because, when you think that [stem cell research] could one day give us the ability to reconnect gaps in the spinal column," she added.
Christopher Reeve's Stem Cell Support
Christopher Reeve, who died in 2004 of heart failure, was an advocate for stem cell research. Since his death, his children have continued the fight for research.
Since the death of Christopher and Dana Reeve, their foundation has continued its mission. The couple's only son, Will Reeve, is now a high school junior.