World MS Day helps raise awareness about invisible symptoms of disease

PHOENIX – World Multiple Sclerosis (MS) Day is officially marked on May 30, each year. Events and campaigns take place throughout the month of May, raising awareness about the invisible symptoms of the disease that nearly one million people in the United States are living with.

The day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis. This year the 2019 campaign will be called “My Invisible MS” (#MyInvisibleMS) and the theme is visibility.

In 2009, the MS International Federation (MSIF) and its members initiated the first World MS Day. It focuses on a different theme each year that brings awareness to one of the most common neurological disorders in the world.

MSIF provides a toolkit of free resources online to help everyone to take part in World MS Day. Anyone can use these tools, or make their own, to create positive change in the lives of millions of people around the world.

A study conducted by the National Multiple Sclerosis Society and published in the February 2019, issue of Neurology, the medical journal of the American Academy of Neurology, shows more than twice as many people in the U.S. are living with multiple sclerosis than previously thought. The previous studies estimated the prevalence to be 400,000, but this new study shows that number is closer to 1 million.

“This study tells us many things, but one thing in particular — twice as many people need a cure,” said Cyndi Zagieboylo, President and CEO of the National Multiple Sclerosis Society.

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis.

The cause of MS is still unknown, and there is no cure.

As the leading organization in the MS movement, the Nation MS Society recognized the need to have a more accurate estimate of the number of people in the country with MS.  So, it committed the funds and began the study in 2014, which brought together some of the best experts in neurology, epidemiology and statistics.

It was a complex and thorough process, using a special algorithm to search through data from a variety of sources including Medicare, Medicaid, the Veteran’s Health Administration and private insurers. The study produced three papers all of which were peer-reviewed and published in Neurology Magazine.

“This was an innovative, big data project that used information from more than 125 million health records,” said Nick LaRocca, Vice President of Healthcare Delivery and Policy Research for the Society, and a co-author of the study. “Our hope is that the methods we used in this study can be applied to estimate prevalence of other medical disorders.”

The National MS Society believes the results of this study will help it achieve the goal of a world free of MS.

The Arizona Chapter President of the National MS Society, Karen LaPolice Cummins, says that this year’s World MS Day is more important than ever based on the findings in its recent study.

“Twice as many people need a cure than previously estimated, and the first step toward finding a cure for MS is raising awareness,” Cummins said. “In Phoenix, we host events all throughout the year to bring Arizonans together to call attention to the cause.”

For more information on the MS Prevalence Study: nationalmssociety.org/prevalence.