National Multiple Sclerosis Society: North NJ Chapter · South NJ Chapter
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Multiple sclerosis (MS) involves a process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS) — the brain, spinal cord and optic nerves. Within the CNS, the immune system causes inflammation that damages myelin — the fatty substance that surrounds and insulates the nerve fibers.
The cause of MS is not known, but it is believed to involve genetic susceptibility, abnormalities in the immune system and environmental factors combine to trigger the disease.
Nearly 1 million people in the U.S. are now living with multiple sclerosis, more than twice the number previously estimated. This new prevalence number comes from a pivotal four-year study of millions of health records.
The Society, along with other advocacy groups, had gone to Congress a number of times to ask for funds for a better system to track neurologic conditions, including MS> But according to Nicholas LaRocca, PhD, former vice president of health care delivery and policy research for the Society, “he bill we supported wasn’t voted on until 2016 and was only funded in the fall of 2018. In 2013, while we were waiting for Congress to act, we decided that people with MS couldn’t wait any longer for a better estimate, and so the Society stepped up to provide funding for a national study of MS prevalence.”
Researchers don’t know yet exactly why the new prevalence number is twice the older number. It could reflect overall population growth, better diagnosis, the impact of disease-modifying drugs on extending the life of those with MS, the use of a new approach to the study of prevalence or other factors that simply aren’t understood. However, LaRocca stresses a key message from this study:
“Now that we know that there are twice as many people with MS, we have to work twice as hard and redouble our efforts on pathways to a cure.”