MS and Paralysis Numbers Don't Add Up
A big new survey of the number of people living with paralysis in the U.S. released yesterday yielded some surprises.
The research -- sponsored by the Christopher and Dana Reeve Foundation and conducted by the University of New Mexico, with input from the Centers for Disease Control and Prevention and dozens of experts -- revealed that some 5.6 million people are living with some form of paralysis. That's a million more than previously known.
The other big surprise, though, is in the underlying numbers. The leading cause of paralysis, the survey found, was stroke -- paralyzing more than 1.6 million people. Next in line, paralyzing almost 1.3 million people, was spinal-cord injury. The third-leading cause of paralysis?
Multiple sclerosis - paralyzing 939,000.
How's that again?
That's more than twice the number of people diagnosed with MS in the U.S. and only a fraction of people diagnosed with MS suffer paralysis.
The National MS Society says about 400,000 people in the U.S. have a medical diagnosis of MS. And while officials there say they respect the Reeve Foundation and the integrity of the new survey, they're not going to alter their count based on this new information.
I went back and forth between the folks associated with the Reeve Foundation survey and the MS Society, trying to pinpoint the cause of the discrepancy. It seems to boil down to how MS and MS-related paralysis are defined and whether people in the survey who reported their paralysis was due to MS had in fact been diagnosed with MS.
Pinning these numbers down is important. Knowing how many people are affected by a condition, be it paralysis or MS, helps society determine what resources to direct toward programs and services for those affected and toward seeking new treatments -- or a cure.
That's why the MS Society has for years advocated for a national MS registry and surveillance system. The group is now tracking HR 1362, a bill before the House of Representatives that would establish such a registry for MS and another for Parkinson's disease. The registry would reside at one of the CDC's agencies and would draw on the CDC's demonstrated capacity to track incidence and prevalence of diseases, from influenza to measles. The society hopes to see a companion bill go before the Senate this summer.
I don't care to pit one of these worthy group's numbers against the others. But wouldn't it be nice to know which figure comes closer?
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