Patient Experience Takes ‘Shape’ for MS Awareness Month

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by Mary Chapman |

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From celebrating artists’ works to sharing stories that bring to life the experience of multiple sclerosis (MS), Multiple Sclerosis Awareness Month is designed to call attention to this neurodegenerative disorder and the nearly 1 million U.S. residents it’s thought to affect.

MS can cause a host of physical problems, including fatigue and muscle spasms, and also some less well-knowm emotional symptoms, such as depression and anxiety. Therefore, visibility and education are keys to better understanding this illness — how to recognize it, and how it’s diagnosed and managed.

Multiple Sclerosis Awareness Month is observed each March. Multiple Sclerosis Awareness Week is March 13–19.

Despite challenges posed by the ongoing COVID-19 pandemic, the Multiple Sclerosis Association of America offers several ways to bring attention to MS and the community’s needs and challenges.

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The organization’s theme for this year is “Shaping the MS Experience.” As such, MSAA will present multiple online educational programs during the month, including webinars and podcasts toward raising awareness among the general public as well as lawmakers, public authorities, industry representatives, researchers, and health professionals.

“While we focus on multiple sclerosis each day of the year, March is a very special time,” Gina Ross Murdoch, MSAA president and CEO, said in an email to Multiple Sclerosis News Today. “This year, in recognition of MS Awareness Month, MSAA is pleased to focus on various aspects of the MS experience throughout the month of March.”

“We are offering several educational programs, which are all available in a digital format, allowing for easy access from the comfort of one’s home. This is particularly important as we continue to navigate the pandemic while expanding upon our important programmatic efforts,” Murdoch said.

First up, on March 2, neurologist Mitzi Joi Williams, an MS specialist and founder of Joi Life Wellness, and actor and patient advocate Damian Washington will participate in an hourlong Instagram Live event beginning at 6 p.m. EST. To join the event, follow @msassociation on Instagram.

Esther Melamed, MD, PhD, a neurologist at the Multiple Sclerosis and Neuroimmunology Center, Mulva Clinic for the Neurosciences, who specializes in the care of adult MS patients, will join a webinar on March 17 titled “The Science Behind MS.” It will run from 8–9 p.m. EST.

On March 28, neurologist Carrie Hersh, DO, a patient advocate and MS specialist at the Cleveland Clinic, Lou Ruvo Center for Brain Health, will take part in the webinar, “Understanding Progression in MS,” starting at 8 p.m. EST.

The webinars will be recorded and their links will be posted on the MSAA website.

Those following the month’s events should also be sure to tune into two podcasts. “Choosing the Right MS Therapy,” features neurologist and MS specialist Barry Singer, MD, the director of the MS Center for Innovations in Care at the at Missouri Baptist Medical Center.

The other podcast, “3 M’s of MS: Mangia, Microbiome, and Molecules,” will spotlight Andrew Woo, MD, PhD, a professor of neurology at the University of California Los Angeles and Cedars-Sinai Medical Center.

MSAA will also present the 2022 Art Showcase, which honors inspirational artwork and shares the personal stories from nearly 50 people who live with MS.

The venerable initiative, which began in 2009, gives adults in the U.S. a chance to show their original work, regardless of skill level. The Art Showcase is also designed to motivate artists who may be struggling with the affect of the disease on their artistry.

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The artworks and accompanying stories will debut on the MSAA website during MS Awareness Month, but all the pieces from the initiative may be viewed throughout the year. In addition, the association will feature a designated Artist of the Month on the website and its social media platforms. Paintings and drawings in a range of media, in addition to graphic design and photography works, will be accepted, according to the call for submissions.

The initiative shows that people with MS can make meaningful contributions to society, according to MSAA.

For Multiple Sclerosis Awareness Week, the National Multiple Sclerosis Society (NMSS) plans to amplify the stories of people who live with MS.

The organization said those with MS manage their condition better when they have the support and understanding of the people around them.

“Stories of life with multiple sclerosis are told through the everyday moments people with MS experience,” the organization states on a webpage about Awareness Week. “Sometimes these moments and feelings can be hard to explain in words, so people with MS often share them in the abstract — the sense that time is standing still as they wait in the doctor’s office to hear the words, ‘You have MS,’ or the experience of waking in the morning and feeling like their legs are encased in cement. Bringing those moments to life, and sharing them with the world, allows the stories of living with MS to be seen and understood like never before.”

To help ensure that more people understand what life with MS can be like, the society is encouraging supporters to explore and share “#MyMSMoment,” a video that features the stories of four people who relate the “everyday moments” that people with MS experience.

For more insight into the lives of those with MS, supporters are invited to follow the organization on Facebook and Instagram and to register with a local Walk MS, a nationwide NMSS initiative to raise funds and MS awareness.

“Driving awareness of multiple sclerosis is a year-round focus of the National MS Society that kicks off during MS Awareness Week in March,” Cyndi Zagieboylo, president and CEO of the NMSS, said in an email. “To achieve our vision of a world free of MS we must help all communities better understand MS and the experience of people living with it.”

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