MS Society Spotlights Patient Stories for MS Awareness Week, March 8-14

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by Mary Chapman |

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The National Multiple Sclerosis SocietyĀ (NMSS) is markingĀ Multiple Sclerosis Awareness Week, March 8-14, by sharing patientsā€™ stories and encouraging participation in fundraising and advocacy efforts.

Each year, a week is set aside to heightenĀ awareness of multiple sclerosis (MS), a neurodegenerative disorder that affects nearly 1 million peopleĀ in the United States.

ā€œMost people donā€™t know about the disease because itā€™s often an invisible illness,ā€ Megan Oā€™Neal, public relations manager for the NMSS, told Multiple Sclerosis News Today in a statement.Ā ā€œMS Awareness Week is a chance for us to help educate people on what itā€™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.ā€

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.

ā€œPeople living with MS are incredibly strong,ā€ Oā€™Neal said. ā€œWe 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.ā€

One patient, a high school student named Wesley, was diagnosedĀ in 2015 at age 13, after his parents noticed that his right arm didnā€™t swing when he walked.

ā€œAt first I thought it was a prank or something because I had never heard of MS,ā€ Wesley, now 17, wrote. ā€œOnce I realized I had a disease that couldnā€™t be cured, I went through kind of a depression. Kids my age donā€™t always care that much about others, but my friends that did care asked questions so they could support me.

ā€œWith the support from friends and family and the right disease-modifying therapy, I realized that Iā€™m still me and could move forward with my life.ā€

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 canā€™t see my invisible symptoms ā€” just because Iā€™m not in a wheelchair doesnā€™t mean itā€™s not hard for me to walk every day,” Antonia wrote. “MS has taught me that you donā€™t know what someone is going through.”

Additional stories, both written and spoken, can be foundĀ 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 organizationā€™s longstanding fundraising events, includingĀ Walk MS, Bike MS, and Muckfest MS. Supporters may also create their own fundraiser to benefit the NMSS. Visit this site to learn how.

Local NMSS events and other MS resources can be found here.

Also upcoming isĀ 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 yearā€™s tagline is ā€œI Connect, We Connect,ā€ 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.