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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."
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."
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