Personal stories of life with MS highlight March awareness month

From participating in educational programs to sharing stories that illuminate the multiple sclerosis (MS) experience, people nationwide are poised to participate in MS Awareness Month, observed each March.

Multiple Sclerosis Awareness Week starts on March 12.

The disorder, thought to affect about one million U.S. residents, can cause an array of physical problems, in addition to emotional challenges such as anxiety and depression. Disease awareness and visibility are crucial for advancing MS recognition, and better patient diagnosis and management.

Recommended Reading

January 26, 2023 Columns by Benjamin Hofmeister

MS Makes Me Feel Like a Child Again, and Not in a Good Way

People sharing their thoughts and concerns run across ‘31 Days of MS’

Throughout MS Awareness Month, Multiple Sclerosis News Today will run a series spotlighting patients’ challenges and perseverance and that of their caregivers.

Called “31 Days of MS,” the monthlong series will feature an individual sharing their MS experience each day. The stories, which cover a wide range of topics, also will appear on Instagram, Twitter, Facebook, and Pinterest with the hashtag #31DaysofMS.

“We’re trying to bring people in who have different perspectives,” said Marco Jiménez, social media manager at Bionews Inc., which publishes Multiple Sclerosis News Today. “Not just patients, but family members, friends, caregivers, MS experts, and so on. We need to be as diverse as possible.”

A few slots are still open for the month, so those who wish to share a personal story should send their entry via email to [email protected].

“We want to champion the voice of our community and find a space for inspiring stories,” Jiménez said. “Some of the stories will be about the challenges and struggles. We want to share what it’s like to live with MS, especially for those with a recent diagnosis or for family members who need to learn about what some patients face.”

The Multiple Sclerosis Association of America (MSAA) has events slated under the theme, “Life with MS: Different Stages of the Journey.” Its campaign will focus on the various life stages of multiple sclerosis, including pediatric MS, young adults and MS, family planning and MS, and aging well with MS.

“The Multiple Sclerosis Association of America (MSAA) is pleased to highlight the different stages of the MS journey as part of our MS Awareness Month efforts,” Gina Ross Murdoch, the organization’s president and CEO, said in an email statement to Multiple Sclerosis News Today.

“We are providing several digital educational opportunities for the MS community to learn more about important topics that impact various age groups — from pediatric MS to young adults, as well as those older in age,” Murdoch added. “Given the complexity of MS and its changing effects over time, we recognize how vitally important these types of programs are for the entire MS community.”

Artworks and helpful offerings marking MS Awareness Month

A webinar on Family Planning and Living with MS is scheduled for March 22 from 8 p.m. to 9 p.m. ET on the organization’s website, and on March 30 during that same time will be a webinar on Healthy Aging with MS. Two separate podcasts will cover young adults and MS and pediatric MS. Throughout the month, the MSAA also will post videos in connection with these webinar and podcast topics on TikTok and other social media.

March opens with the MSAA presenting its 2023 Art Showcase, a program that honors motivational artwork and shares the personal stories of people living with multiple sclerosis.

Art Showcase, now in its 14th year, gives adults in the U.S. an opportunity to show their original creations, regardless of skill level. The initiative also aims to inspire artists who may be challenged by the disease’s varied symptoms. According to MSAA, it demonstrates that those with MS can meaningfully contribute to society.

While this year’s artworks and stories will premier on MSAA’s website during awareness month, works can be viewed year-round. The artworks are done in a range of media, in addition to photography and graphic design, and each month features a different artist.

An MSAA virtual fundraising effort is set for its Improving Lives Through Art spring series. On March 28, from 7 p.m. to 9 p.m. ET, a “paint-along” will be led by Art Showcase artist Omayra Rivera-Filardi. In addition, a Virtual Art Tour will take place on March 14 from 7 p.m. to 8:30 p.m. ET. Tickets for both events are available.

For MS week, the National MS Society (NMSS) will spotlight “My MS Moment,” a platform on which the multiple sclerosis journey is told through everyday life experiences. The organization is encouraging community members to create and share their own “MS moments,” using the hashtag #MyMSMoment, to help raise awareness.

“The National MS Society raises MS awareness every day, especially during MS Awareness Week … and throughout the month of March, where that awareness is amplified for the nearly 1 million people living with the disease in the United States,” Cyndi Zagieboylo, NMSS president and CEO, said in an email statement. “Join us, engage, help us accelerate progress. No one should face MS alone and the Society is here so no one has to.”

In “My MS Moment” videos, people with this progressive neurodegenerative disorder discuss their diagnostic journey, their uncertain future, and their disease’s progression. One patient, “Marti,” talks about her shifting MS symptoms.

“I am fearless, I’m driven, I’m passionate. It’s a little ironic that my MS is as aggressive as I am,” she said in an emotional recording. “I struggle with tremors, double vision, brain fog, and chronic pain.

“One morning I woke up, tried to move my leg, it wouldn’t move. My thoughts were, ‘Is this going to be for the rest of my life, if the inevitable was finally happening to me?’ And then my leg started to tingle. I’d never been more grateful to be in pain again.”