Each year, a week is set aside to heighten awareness of multiple sclerosis (MS), a neurodegenerative disorder that affects nearly 1 million people in the United States.
“Most people don’t know about the disease because it’s often an invisible illness,” Megan O’Neal, public relations manager for the NMSS, told Multiple Sclerosis News Today in a statement. “MS Awareness Week is a chance for us to help educate people on what it’s like to live with MS because the more people who understand the disease, the more people will join in our fight toward a cure.”
As a main part of the observance, the NMSS is using the hashtag #ThisIsMS to share narratives of those affected by the disease, and asks supporters to post the stories on their own social media platforms.
“People living with MS are incredibly strong,” O’Neal said. “We share their powerful stories during MS Awareness Week to show each individual living with MS that we see them, they matter, and no one has to face MS alone.”
One patient, a high school student named Wesley, was diagnosed in 2015 at age 13, after his parents noticed that his right arm didn’t swing when he walked.
“At first I thought it was a prank or something because I had never heard of MS,” Wesley, now 17, wrote. “Once I realized I had a disease that couldn’t be cured, I went through kind of a depression. Kids my age don’t always care that much about others, but my friends that did care asked questions so they could support me.
“With the support from friends and family and the right disease-modifying therapy, I realized that I’m still me and could move forward with my life.”
Antonia was a 27-year-old equestrian when she was diagnosed in 2017. She had fallen off her horse and, after three weeks, continued to experience numbness, which she attributed to a possible pinched nerve.
“The hardest part about having MS is not being able to explain how you feel. I wish I could write I have MS somewhere on my body because people are so judgmental when they can’t see my invisible symptoms — just because I’m not in a wheelchair doesn’t mean it’s not hard for me to walk every day,” Antonia wrote. “MS has taught me that you don’t know what someone is going through.”
Additional stories, both written and spoken, can be found here.
To help others better understand the complex and unpredictable disease, the Society is also promoting its YouTube channel. Video topics run the gamut, from research breakthroughs to the cost of living with MS.
The organization is also encouraging supporters to become MS activists. Visit this link to learn more about volunteer advocacy opportunities on federal, state, and local levels.
Multiple Sclerosis Awareness Week is also a good time to join one of the organization’s longstanding fundraising events, including Walk MS, Bike MS, and Muckfest MS. Supporters may also create their own fundraiser to benefit the NMSS. Visit this site to learn how.
Also upcoming is World MS Day, set for May 30. Launched in 2009 by the Multiple Sclerosis International Federation, based in London, this global event also aims to raise awareness of MS and to connect patients around the world. This year’s tagline is “I Connect, We Connect,” a reference to connections to self, the community, and quality care.
Worldwide, 2.3 million people are thought to have MS, according to an estimate made in 2013.
