Living with MS

Illustrated by Eugenia Yoh

“I am not a disease,” as Nancy Mairs wrote in 1986 as a person living with Multiple Sclerosis. This syndrome is characterized for unknown causation and non-fatalness, bringing carriers a broad spectrum of symptoms, most of which involve exacerbation, the sudden onset of worsening, and the recovery from it (1).Diagnosing someone with MS can be incredibly stigmatizing due to the lack of awareness, and we need to take our part and make it better.

It is not a common sense that MS rarely leads to immediate death or complete paralysis. With appropriate medical intervention, most MS patients can enjoy a high life quality and share a relatively normal life expectancy. A dozen drugs, including Aubagio (teriflunomide) and Betaseron (interferon beta-1b), have been proven effective and are widely applied in clinical practices nowadays (2). A group of German scientists are clarifying the biomarker of specific chemicals applied in the treatment, which helps to better evaluate the outcomes of medical interventions (3).

However, people experiencing MS onsets and subsequent physical disabilities are often professed “…fondness while silently [being] putting up with,” as Mairs discovered 40 years ago. It was justified to display special empathy for “the disabled.” Reciprocally, the people with disability should always stay conscious of their special identity. Such moral responsibilities remain in the society now. Instead of depriving effected individuals with identity, there is absolutely no need to identify a person only as a “impressive MS victim and fighter” instead of “a beloved mother, literature critique and college professor.” A great number of people are living with it right now, attending colleges, going to work and raising children just like everyone else.

To raise the awareness out on the field, Missouri state is doing an important job. Several bills have been passed in Missouri State senate to provide legislative support for the healthcare providers and increasing the accessibility of public medical resources for Missourians living with MS (4). In 2015, Missouri became the first state to publicly fund a telehealth project to educate primary care providers around the state through receipt of $1.5 million to create the ECHO program (5).

Non-profits are contributing as well. Two major non-profit organizations are running for MS patients and their families, providing local support and raising social awareness. National Multiple Sclerosis Society provides localized healthcare support, specifically through hosting various philanthropy events and creating a community for people living with MS both online and in-person. The Gateway Charter in Missouri facilitates workshops and fund-raising events like charity bike rides.

With that being said, MS needs more attention from the general public audience. Nancy Mairs presented the social stigmatization of people with disabilities. Unlike the globally prevalent Ice Bucket Challenge campaign and its contribution to ALS, there is not a successful digital media marketing campaign for multiple sclerosis. Though wearing your bracelet at the beginning of March- the “Multiple Sclerosis Awareness Week” – would be a good idea, do you know what’s better? Go to the Walk MS event on April 14 and spread the word!

Edited by: Frank Lin

Illustrated by: Eugenia Yoh


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