More than a million people in the United States have multiple sclerosis… or is it half a million… or a quarter of a million… but then again, who’s counting?
When I was first diagnosed with MS, I was stunned by the number of acquaintances who said they were related to, or knew someone with MS. It seems like everybody has a story, yet most sources indicate that only about 400,000 people in the U.S. have MS. With a population of more than 304,000,000 people, that would make MS quite rare.
In April 2009, the Christopher and Dana Reeve Foundation announced the results of a study conducted by the University of New Mexico’s Center for Development and Disability, that indicated that 939,000 people in the US have some degree of MS-related paralysis. That would mean that the actual number of people with MS is much higher than that.
Current estimates from reputable sources vary:
- 250,000 to 300,000: National Institutes of Health – National Institute of Neurological Disorders and Stroke
- 350,000 to 500,000: Multiple Sclerosis Foundation
- 400,000: Multiple Sclerosis Association of America and National Multiple Sclerosis Society
- 1,000,000: Montel Williams MS Foundation
So how many people in the United States have multiple sclerosis… why don’t we know, and does it matter?
We don’t know the exact numbers because MS is not tracked by the Centers for Disease Control or any other federal agency. In fact, there is no coordinated effort at all to track the incidence of MS in the United States. The last national study of MS rates took place in 1975, and much has changed since then.
Both the Senate and the House have pending legislation that, if passed, would create separate registries for two devastating neurological conditions — Parkinson’s disease and multiple sclerosis — at the Agency for Toxic Substances and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention.
If the legislation passes, the information collected will provide valuable insights into MS regarding the gender ratio, age at onset, geographic clusters, etc.
Tracking the numbers may also help researchers gain insight into pediatric multiple sclerosis. MS, for all its variations and symptoms, is an extremely difficult disease to confirm in any case. Typically, MS is diagnosed in people over the age of 35, so pediatricians generally do not look for symptoms in children. Mild symptoms in children, especially if they come and go, are easily missed — or dismissed.
The introduction of magnetic resonance imaging (MRI) has enabled physicians to pinpoint lesions in the central nervous system, leading to a diagnosis of MS sooner, and in younger patients, more than ever before.
The National Multiple Sclerosis Society reports that “up to 10,000 of the estimated 400,000 Americans who have MS are children or adolescents. At least that many children also have experienced at least one symptom suggestive of MS. Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.”
Is the incidence of pediatric MS increasing, or is it that doctors are getting better at diagnosing MS in children? Some research suggests that MS is caused by a combination of genetics and environment. If that’s the case, pinpointing the number of children with MS, in the early stages of the disease, could help researchers find important new leads in the search for a cause, better treatments, and a cure.
Understanding how many people are affected by MS, and who they are, may also have in impact on funding for research and community programs that assist the disabled.
The numbers matter.
You can read the complete text of the proposed legislation and current status at the links provided below. Please urge your legislators to support these bills and people with multiple sclerosis and Parkinson’s disease.
Senate Bill: S.1273 National MS and Parkinson’s Disease Registries Act
House Bill: H.R.1362 National MS and Parkinson’s Disease Registries Act
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.